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(p. 289) Young Women on the Autism Spectrum 

(p. 289) Young Women on the Autism Spectrum
Chapter:
(p. 289) Young Women on the Autism Spectrum
Author(s):

Meng-Chuan Lai

, Stephanie H. Ameis

, and Peter Szatmari

DOI:
10.1093/med-psych/9780190624828.003.0012
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date: 16 October 2018

  • Females on the autism spectrum often face unique challenges in social-communication, sensory environments, mental health, physical health, gender-related issues and identity development.1

  • Autism tends to be under-recognized in females owing to a higher likelihood of subtler and partially different behavioral presentation, as well as possible biases on the interpretation of their behaviors by the source of referral or the diagnostician.

  • Studies using standardized instruments tend to show lower levels of repetitive, restricted, and stereotyped behavior in females, but social-communication differences vary greatly by age and developmental level; males and females may meet the diagnostic criteria in partially different ways.

  • Anecdotal clinical and autobiographical observations suggest that compared with autistic males, autistic females may show more social interests and motivation, heightened emotion contagion or affective (p. 290) empathy, increased imagination, more friendships but with different quality, greater camouflaging of social difficulties, and different contents of narrow interests.

  • The assessment and diagnostic processes for autism are independent of sex and gender, but they need to be optimized by taking into account influences from sex and gender (including gendered sociocultural contexts), in order to improve the identification of autism in females and their difficulties.

  • Optimized support for young women on the autism spectrum is best based on the understanding of their needs and characteristics, targeting resilience and person–environment fit, and taking into account the influences of gendered sociocultural contexts; this often involves not only skill-building and graded exposure for the individual, but more importantly, also adjustments to the social and physical environments.

Is Autism Really a Male-Predominant Condition?

When autism (also known as “autism spectrum disorder, ASD” or “autism spectrum condition, ASC”) was first construed as an atypical human developmental condition, the case series demonstrating the clinical picture were all in children, either on a male-predominant sample (Kanner, 1943) or on boys exclusively (Asperger, 1944; Ssucharewa & Wolff, 1996). Many subsequent clinical and epidemiological studies over half a century have similarly documented a male preponderance in prevalence, even with several revisions and broadening of the diagnostic criteria (Fombonne, Quirke, & Hagen, 2011). Over the years, the reported male–female ratio, mostly estimated from clinically identified samples, has been around 4–5:1 (Christensen et al., 2016; Fombonne et al., 2011; Raz, Weisskopf, Davidovitch, Pinto, & Levine, 2015).

However, several lines of emerging evidence challenge this commonly cited ratio. First, nationwide registry data, for example from 1995–2010 in Denmark, show a relatively stable 4:1 male to female ratio for ICD-10 (International Classification of Diseases–10th ed.) childhood autism (i.e., from 3.5:1 to 4.2:1), but those for Asperger’s syndrome and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) have dropped substantially, from 8.4:1 to 3:1 and from 5.7:1 to 2.8:1, respectively. Overall, the ratios have dropped from 5.1:1 to 3.1:1 for the whole autism spectrum (Jensen, Steinhausen, & Lauritsen, 2014). This indicates that in the past two decades, an increasing proportion of females is being formally recognized, and their symptoms are more likely to be on the “milder” ends of the autism spectrum. Second, many recent large-scale, population-based epidemiological studies that involve active case ascertainment (i.e., where researchers actively find and recruit individuals who may have autism, such as those who scored above cutoff on a screening instrument, in the general population) show a 2–3:1 male-over-female preponderance (Baird et al., 2006; Baxter et al., 2015; Idring et al., 2012; Idring (p. 291) et al., 2015; Kim et al., 2011; Mattila et al., 2011; Saemundsen, Magnusson, Georgsdottir, Egilsson, & Rafnsson, 2013). In fact, the latest systematic review and meta-analysis shows that when active case ascertainment is applied the ratio is 3.25:1, whereas when passive case ascertainment is used the ratio is 4.56:1 (Loomes, Hull, & Mandy, 2017), indicating that more females are likely to be identified via active case ascertainment than when researchers are only relying on previously established clinical diagnoses. Therefore, there appears to be a diagnostic and identification bias towards males. Third, recent longitudinal follow-up studies of siblings of autistic individuals from infancy show that the male–female ratio is also about 3:1 or less (Messinger et al., 2015; Zwaigenbaum et al., 2012). This indicates that, when children who have higher risk of developing autism are closely followed up and comprehensively assessed from infancy, the likelihood of females’ being identified and diagnosed with autism at the age of three years is again higher than that noticed in clinically referred samples. Altogether, these data indicate the possibility that the “true” male:female ratio of autism prevalence should be around 3:1 (Halladay et al., 2015; Lai, Lombardo, Auyeung, Chakrabarti, & Baron-Cohen, 2015; Loomes, Hull, & Mandy, 2017). The widely cited 4–5:1 ratio could partly reflect biases related to both how the diagnostic concept of autism (and the instruments used to assist diagnosis) has historically been construed (Lai et al., 2015), and how diagnosticians may be biased by existing stereotypes related to both autism and gender (Kreiser & White, 2014a). Accurate and timely identification of autism in females and the recognition of their associated clinical needs are pressing challenges across all levels of service.

Challenges in the Identification of Autism in Females

Several studies show that prior to receiving a diagnosis of autism, parents and teachers often have fewer concerns about affected girls than about affected boys (Hiller, Young, & Weber, 2015; Little, Wallisch, Salley, & Jamison, 2016). Large-scale survey and administrative data concur that a clinical diagnosis of autism tends to be made later in life in females than in males, particularly for those without developmental delays or intellectual disability (Begeer et al., 2013; Giarelli et al., 2010; Kocovska et al., 2012; Rutherford et al., 2016; Shattuck et al., 2009). Given comparable levels of autistic traits, boys are more likely to receive a clinical diagnosis of autism than girls (Russell, Steer, & Golding, 2011). When compared with same-sex controls, girls who do receive a clinical diagnosis are more likely than boys who receive a diagnosis to have concurrent emotional, behavioral, or cognitive difficulties (Duvekot et al., 2017; Dworzynski, Ronald, Bolton, & Happe, 2012). In general, there seems to be an invisible “gender barrier” for females with autism to receive timely diagnoses and appropriate supports, as recalled by females with autism who later did receive a diagnosis (Baldwin & Costley, 2016). Such a “gender barrier” is manifested by less-recognizable difficulties prior to a (p. 292) formal diagnosis, diagnosis made later in life, and the need to present with more concurrent difficulties for a diagnosis to be made.

What contributes to this “gender barrier”—the later and under-recognition of autism in females? Two plausible sources have been identified (Lai et al., 2015): (1) the formation of the behavioral definition and clinical assessment of autism, and (2) the interpretation of behaviors from the source of referral and the diagnostician.

Identification Challenges Arising from the Diagnostic Criteria and Instruments

Historically, most individuals identified as having autism are male. Therefore, the formation of the diagnostic concept, the initial operational definitions of autism (e.g., Rutter’s 1978 criteria and the DSM-III criteria) (American Psychiatric Association, 1980; Rutter, 1978), the subsequent revisions of consensual diagnostic criteria, and instruments designed to assess and quantify the multiple domains of autistic characteristics (e.g., the Autism Diagnostic Interview–Revised [ADI-R], the Autism Diagnostic Observation Schedule [ADOS]), are mostly based on the observed behaviors in males (and primarily in children). It is therefore not surprising that some behavioral presentations of autism that are substantially moderated by one’s sex (i.e., regarding biological attributes) and gender (i.e., regarding socially constructed roles, behaviors, expressions, and identities) may not be well captured—bias in sampling and the formation of diagnostic concept/instruments can be exaggerated via an interactive vicious circle (Kreiser & White, 2014a). For example, instruments like Module 4 of ADOS may be less sensitive to autistic behavioral presentations in adolescent and adult females than in males (Langmann, Becker, Poustka, Becker, & Kamp-Becker, 2017), and this may partly contribute to under-diagnosis in females without intellectual disability (Brugha et al., 2016).

Conceptually, any sex- or gender-moderated behavioral presentation of autism should either present at the level of overt behavior (i.e., behavioral exemplars), or at the level of how the fine-grained subdomains of autistic characteristics are organized into the high-level, abstract, but defining domains of autism (i.e., early-onset social-communication difficulties and restricted, repetitive, and stereotyped behaviors and idiosyncratic sensory responses [RRSB]). Meanwhile, the high-level and abstract domains constitute the core definition of autism, and they should be a priori defined as sex- and gender-neutral (i.e., not moderated by sex or gender) (Lai et al., 2015). Recent psychometric studies on measurement invariance and factor structure of some widely used instruments, including the ADI-R, the Social Responsiveness Scale (SRS), and the Autism Spectrum Quotient (AQ), show that males and females with autism do not differ in how the wide range of autistic characteristics is organized into fine-grained subdomains (Frazier & Hardan, 2017; Grove, Hoekstra, Wierda, & Begeer, 2017). This indicates that sex and gender differences in autistic characteristics are most likely to be at the level of overt behavioral presentation—i.e., on average, females may present their (p. 293) autistic characteristics by different behavioral exemplars than do males. Certain behavioral exemplars representing autistic characteristics in females—sometimes called the “female phenotype”—are therefore likely to be missed by caregivers or in ordinary clinical assessments. This may be the first critical reason explaining why some females “fly under the radar” and receive their diagnoses only later in life, or when developing and experiencing additional difficulties.

Is There a “Female Phenotype” of Autism?

To date, research has not demonstrated a completely different “female phenotype” of autism distinct from the “classic” phenotype (as noted in mostly male individuals). However, the research has also not comprehensively described and tested how sex and gender exactly influence the overt behavioral presentation of autism. Rather, it has been noted that the presentation, especially regarding social-communication difficulties, can be subtler in females without intellectual disability, contributing to the under-recognition of autistic symptoms in females (American Psychiatric Association, 2013). However, increasing evidence shows that there are specific aspects of behaviors in which females, on average, may present their characteristics of autism not only in subtler ways, but also differently from males. The reported differences can be summarized in two categories: (1) those captured by commonly used, standardized instruments, and (2) those based on anecdotal but repeated clinical and autobiographical observations.

Standardized Instruments

Recent psychometric examinations of the commonly used standardized instruments indicate that their factor structures do not differ, and there is measurement invariance, across males and females (Frazier & Hardan, 2017; Grove et al., 2017). With this background, the most common finding on male–female differences in autistic characteristics measured using the “gold standard” instruments (e.g., ADI-R, ADOS, SRS, AQ, etc.) is that females on average score lower on RRSB than males (Van Wijngaarden-Cremers et al., 2014). This has been found in toddlers (Messinger et al., 2015), children and adolescents (Frazier, Georgiades, Bishop, & Hardan, 2014; Mandy et al., 2012), as well as adults (Lai et al., 2011; Wilson et al., 2016), and across individuals in simplex (i.e., with only one occurrence of autism in the nuclear family) (Frazier et al., 2014) and multiplex (i.e., with more than one occurrence in the nuclear family) families (Messinger et al., 2015; Szatmari et al., 2012). Nevertheless, measured differences in autistic characteristics vary significantly by language and developmental levels. In nonverbal individuals or those who are diagnosed early in life, there are limited male–female differences noted in either social-communication or RRSB domains (Harrop, Gulsrud, & Kasari, 2015; Harrop, Shire, et al., 2015; Howe et al., 2015; Reinhardt, Wetherby, Schatschneider, & Lord, 2015), or the trajectories of symptom changes across domains (Messinger et al., 2015; Postorino et al., 2015). In contrast, in verbal individuals and those who are identified later in life, studies often find lower (p. 294) levels of RRSB and fewer observable social-communication symptoms in females (Howe et al., 2015; Lai et al., 2011; Wilson et al., 2016).

More fine-grained investigations into subdomain and item-level data of these instruments have begun to reveal informative differences. Linear discriminant analysis on large-scale ADI-R datasets has identified six items that most significantly separate autistic males from autistic females: females have lower scores on “imaginative play” (less deficit), “circumscribed interests” (less intensity), and “unusual preoccupations” (less intensity), and higher scores on “range of facial expressions used to communicate” (more deficit), “self-injury” (more severe), and “drawing skill” (better skill) (Beggiato et al., 2017).

In children with autism, girls and boys seem to meet the diagnostic criteria in partially different ways. Girls are more likely to be able to engage in a reciprocal conversation and share interests (though this is shown only in a minority of girls), to integrate nonverbal and verbal expressive behaviors (but they are no different compared to boys on understanding and interpreting nonverbal behaviors of others), to present with better imagination (at least on face value), to be able to initiate (but not maintain) friendships, and to present with fewer stereotyped uses of objects and fewer (and different contents of) restricted interests (Hiller, Young, & Weber, 2014). Corresponding to this, an experimental study finds that when measuring reciprocal interaction during a joint drawing activity, teenage girls with autism show more reciprocal behavior than teenage boys with autism (Backer van Ommeren, Koot, Scheeren, & Begeer, 2017). All these may result in a surface-level, quantitatively minor or even qualitatively different presentation of autism compared with the “classic” phenotype—seemingly less impaired, therefore raising fewer concerns from parents or the teachers in the classroom (Hiller et al., 2014, 2015).

Clinical, Experimental, and Autobiographical Observations

As argued earlier, “gold standard” instruments for autism assessment may be biased towards better recognition of autism in males compared to females, due to the male-predominant sampling across decades that contributes to the formation of the diagnostic criteria and the design of these instruments (Kreiser & White, 2014a; Lai et al., 2015; Rutter, Caspi, & Moffitt, 2003). Beyond the male–female commonality and differences captured by these instruments, as summarized earlier, clinicians and stakeholders over the years have described various behavioral features that may characterize females with autism better, in particular for those who failed to be identified early in life (i.e., fitting less well with the “classic,” male-centered presentation). Although there is still a lack of systematic, empirical studies to design new instruments to capture these behavioral domains and to test their psychometric properties and diagnostic values, anecdotal observations have converged to indicate the following aspects of behavioral presentations that are more likely to present in females than in males with autism.

Social Interests, Motivation, and Reciprocity

Several pioneers studying the autism spectrum have reported that girls with autism tend to be more outgoing, communicative, and sociable than their male (p. 295) counterparts (Wing, 1981a; Wolff & McGuire, 1995). They may also be more aware of and feel the need to interact with others socially (Gould & Ashton-Smith, 2011), a characteristic potentially related to gender socialization and gendered sociocultural contexts (e.g., gender-based role expectations) (Kreiser & White, 2014a). Some girls and women report having enhanced affective responses and resonance when viewing others’ negative emotions, yet having difficulties differentiating their own emotions from others’ (akin to enhanced emotional contagion or empathic attunement) (Evans-Williams & Williams, 2016). Preschooler boys and girls with autism display similar play complexity, but girls engage more with dolls and domestic items, whereas boys play more with cars and garage items, showing a concordance between sex and the choice of highly gendered toy sets for both groups (Harrop, Green, Hudry, & Consortium, 2017). The presence of, or even heightened, imagination (e.g., the presence of doll play) may be more common in girls than boys with autism—a finding revealed not only by gold-standard instruments (Beggiato et al., 2017) but also by experimental tasks (Knickmeyer, Wheelwright, & Baron-Cohen, 2008) and clinical observations. Some girls with autism have elaborate fantasy and imaginary worlds, but this rich inner world is mostly solitary and not shared with peers in the real world (Gould & Ashton-Smith, 2011). Despite all these, difficulty with understanding social interactions (e.g., difficulty with mentalizing/cognitive empathy) and unspoken social rules is still a cardinal feature of autism in girls and women (same as in boys and men). Many girls and women are passive and therefore viewed by others as merely “shy,” while their social difficulties are under-recognized (Gould & Ashton-Smith, 2011).

Friendships and Relationships

In contrast to the over-simplified, stereotypical view that individuals with autism do not have friends, it is not uncommon for girls and women with autism to have one or more friends, and friendships may be more commonly seen in females than in males with autism (Gould & Ashton-Smith, 2011). Peer-nomination data in school-aged children show that autistic boys are more overtly socially excluded than autistic girls, who tend to be overlooked rather than overtly rejected (Dean et al., 2014). Questionnaire- and interview-based studies find that, as adolescents, girls with autism report better friendship quality than boys with autism (e.g., closer, more helpful, and more secure); girls with autism tend to show a level of friendship quality that is close to, or comparable with that of typically developing (also known as “neurotypical”) girls, whereas boys with autism tend to show a different (e.g., less helpful, less close, and less secure) quality of friendship compared with either neurotypical boys, or girls with or without autism (Head, McGillivray, & Stokes, 2014; Sedgewick, Hill, Yates, Pickering, & Pellicano, 2016). Teenage girls with autism also report viewing friendship as important and rewarding (Foggo & Webster, 2017). Many of them clearly have the motivation to develop and maintain friendship, but this becomes increasingly difficult during the teenage years (Tierney, Burns, & Kilbey, 2016)—a period when they identify high levels of relational aggression within their friendships, indicating that dealing with social conflicts is a big struggle (Sedgewick et al., 2016). Finally, during the teenage years and (p. 296) in adulthood, many women (and men) on the autism spectrum also desire and do develop romantic relationships (Baldwin & Costley, 2016; Strunz et al., 2017).

Camouflaging

It has been repeatedly proposed that one reason for a later, and sometimes more difficult diagnosis of autism in girls and young women, especially those without overt developmental disabilities, is that they are more likely to conceal, mask, or compensate—that is, to camouflage their difficulties (Attwood, 2007; Gillberg, 1991; Wing, 1981b). Camouflaging may therefore be one of the major reasons why females on the autism spectrum are often not diagnosed until they can no longer compensate (Baldwin & Costley, 2016; Bargiela, Steward, & Mandy, 2016). Reflections from autistic women and their parents support this idea (Ernsperger & Wendel, 2007; Hendrickx, 2015; Lawson, 1998; Miller, 2003; Simone, 2010; Willey, 1999; Zaks, 2006), as do observations from clinicians and researchers (Attwood, 2006; Gould & Ashton-Smith, 2011; Kopp & Gillberg, 1992; Lai & Baron-Cohen, 2015; Lai et al., 2015; Marshall, 2015). Survey-based qualitative data show that, in adults with autism, across different genders, motivations for camouflaging are to fit in and to increase connections with other people; camouflaging is achieved by a combination of masking and compensation techniques; and the consequences include exhaustion, being perceived by others as not meeting the stereotypes for an autistic person, and threats to self-perception (Hull et al., 2017).

School-age girls with autism may camouflage their social difficulties on the playground to a greater extent than boys with autism, by staying in close proximity to peers and weaving in and out of activities, and therefore they are less likely to be identified as struggling socially—from a distance, they look like neurotypical girls (Dean, Harwood, & Kasari, 2017). Nevertheless, it seems that difficulties in girls with autism are not hidden from the peers who directly interact with them. During adolescence and young adulthood, interview-based data suggest that females develop and use explicit strategies such as imitation, learning social behaviors from media, manualizing social behaviors, and masking to conceal difficulties and to cope with daily social demands, while experiencing both positive and negative impacts of camouflaging (Bargiela et al., 2016; Tierney et al., 2016). Clinicians also observe that, owing to cultural and gendered expectations of females behaving in a “ladylike” manner, many women may habitually suppress their stimming and motor mannerisms (Evans-Williams & Williams, 2016). Experiment-based operationalization of camouflaging indicates that, on average, women with autism show higher levels of camouflaging than do men with autism, but this phenomenon presents and varies greatly in both males and females—it is not exclusively seen in autistic females (Lai, Lombardo, et al., 2017).

Restricted Interests

One reason to explain why standardized instruments tend to find a lower level of RRSB in females than males may be a combination of a truly lower level (in terms of intensity and quantity) of sex/gender-neutral RRSB (e.g., repetitive use of objects, motor mannerisms) and missed RRSB that are qualitatively different by (p. 297) sex/gender. Clinicians have noted that narrow interests in girls and women with autism often involve topics related to people and animals (e.g., soap operas, celebrities, pop music, fashion, manga, horses, pets, or literature) rather than objects and things (Evans-Williams & Williams, 2016; Gould & Ashton-Smith, 2011); they are more likely to be reported by parents as interested and engaged in “seemingly random” topics or objects (e.g., animals, rocks, stickers, pens) (Hiller et al., 2014). The content can often be similar to common hobbies of neurotypical girls and are not “prototypical” of autism, odd, or stereotypically male (e.g., involving transportation, numbers, dinosaurs, technology, scientific facts, etc.). If the intensity and length of time spent on the fixated interests, their exclusivity, and related functional impacts are not carefully considered, they may be missed and result in under-recognition of RRSB in females.

Sensory Responsivity

Women with autism often describe experiencing idiosyncratic sensory responsivity (Grandin, 2008; Lawson, 1998; Williams, 1992). One study in adults showed that from parental report, women with autism in their lifetime show more sensory issues compared with men with autism (Lai et al., 2011). Larger-scale empirical studies are still needed to test for any consistent male–female differences in sensory characteristics of autism.

Other Characteristics

A broad range of other behavioral or personality characteristics has been anecdotally proposed to reflect the unique characteristics of autism in females, including a tendency to be perfectionistic or very determined, a tendency to be controlling, demanding high standards of friends (e.g., extreme loyalty), forming very “clingy” relationships with specific persons, high demand-avoidance, a tendency to have episodes of eating problems, and excessive shyness or bossiness, etc. (Gould & Ashton-Smith, 2011; Kopp & Gillberg, 2011; Lai & Baron-Cohen, 2015; Lai et al., 2015). However, it is still unclear exactly how these are associated with, or derived from, the core social-communication or RRSB characteristics of autism.

Identification Challenges Arising from Biased Interpretation of Behaviors

A second possible reason for under-recognition of autism in females is related to potential biases in the interpretation of behaviors from the source of referral, resulting in reduced referrals for assessment, and from the diagnosticians, resulting in missed identification (Kreiser & White, 2014a). First of all, there may be a general expectancy bias among clinicians (Rutter et al., 2003). Since autism is believed to occur more in males, general clinical expectancy may result in biased diagnostic patterns of clinicians in favor of making the diagnosis in males and reducing the likelihood of making a diagnosis in females (Bargiela et al., 2016; Hartung & Widiger, 1998). Such bias can be further aggravated by diagnostic (p. 298) “overshadowing” (i.e., mis-attributing symptoms to already diagnosed conditions and hence under-recognizing underlying or comorbid conditions) or substitution in females (Gould & Ashton-Smith, 2011; Kopp & Gillberg, 1992; Lai & Baron-Cohen, 2015; Luciano et al., 2014; Mandy & Tchanturia, 2015; Trubanova, Donlon, Kreiser, Ollendick, & White, 2014), by co-occurring or secondary mental health challenges (e.g., other neurodevelopmental disorders, anxiety, depression, eating disorder, emotion-regulation difficulties), or misdiagnoses (e.g., borderline personality disorder, psychotic disorders).

Secondly, and more specifically, gendered sociocultural contexts are likely to influence the interpretation of behaviors in the eyes of the referral source (e.g., parents and teachers) and the diagnostician. Therefore, social-interpersonal difficulties manifested as withdrawal or passivity may be more likely interpreted as “shyness” when occurring in females, which is often stereotyped as female-typical, but viewed as “unresponsiveness” in males, which is more likely treated as a red flag to initiate thorough assessment for autism (Goldman, 2013). Similarly, when a child or teenager manifests anxiety, gender stereotypes may tend to normalize it if this happens in females, because such gender stereotypes may be that “it is normal for females to be more emotional than males,” especially considering that in the general population, rates of anxiety are indeed higher in females from as early as the preschool years (Zahn-Waxler, Shirtcliff, & Marceau, 2008). This bias may subsequently prevent clinicians from in-depth exploration of the characteristics and roots of the anxiety symptoms, while in fact they are indicators of underlying signs/symptoms consistent with autism (e.g., social overload, sensory idiosyncratic responses, resistance to change, or fear of uncertainty).

Challenges Faced by Young Women on the Autism Spectrum

Young women with autism, no matter whether diagnosed early in life or only recognized later on, frequently report a wide array of long-standing challenges that they face on a daily basis. Improved recognition and understanding of these unique challenges is key to the delivery of appropriate supports.

Social-Communication Challenges

Despite the observation that many girls and young women with autism are motivated to develop peer relationships, the complexity and unpredictability of social interactions and relationships are a constant challenge (Hendrickx, 2015; McKibbin, 2015), especially in adolescence and beyond (Tierney et al., 2016). Some have developed social coping strategies such as camouflaging, but this often leads to exhaustion and requires significant time alone to de-stress (Foggo & Webster, 2017). All the core and associated characteristics of autism may contribute to the social-communication challenges. Many girls and young women (p. 299) develop social skills by their own exploration and reflection, observation learning, mimicking and imitation, analyzing and creating social scripts, repeated rehearsing, or through formal interventions and supports targeted at social skills and adaptation—many of these are naturally facilitated or enforced by the gendered sociocultural contexts. However, they may still find many ordinary social and interpersonal scenarios challenging, owing to their rapidly changing and often-unpredictable nature.

Many autistic individuals develop a certain level of explicit, controlled processes to augment social skills, such as memorizing social scripts, reading emotional faces through analysis of facial components, and inferring the intentions and mental state of others through logical analysis or effortful “computation.” However, most autistic individuals continue to struggle with aspects of social communication that rely heavily on implicit and automatic cognitive processes (Senju, 2012). These may include their weak intuitive understanding and tracking of the complex mental state of others, difficulties in perceiving and understanding others’ complex emotions (especially when there is insufficient input information, such as speaking over the phone and without accompanying facial cues), automatic tracking and understanding of nonverbal cues, and insufficient appreciation of the nuances of different and intricate social scenarios. Attempting to track down these rapidly evolving, sometimes illogical neurotypical interactions by conscious efforts (i.e., via controlled processes) can be particularly exhausting for autistic individuals. This may be why many autistic individuals easily experience social overload (despite their motivation to engage in social life) and frequently require being alone to de-stress and recover. This may also explain why social anxiety symptoms, or a diagnosis of social anxiety disorder, are prevalent in autistic individuals (Bejerot, Eriksson, & Mortberg, 2014; Kreiser & White, 2014b; Maddox & White, 2015).

These social-communication difficulties are probably experienced by all individuals with autism, but in many gendered sociocultural contexts where females are stereotypically expected to be “naturally” more capable of social life, autistic girls and women (especially those who are not identified early in life) can experience more stress through gendered expectations and sanctions of violating social norms (Kreiser & White, 2014a). When women with autism are asked to reflect on their experiences as teenagers, many of them recall insufficient support during their time in education to address, not only learning-related problems, but also social-interpersonal challenges (Baldwin & Costley, 2016). They might be recognized as being “different,” but their unique difficulties, most likely core to autism, are often overlooked, especially if they are academically able and not having overt behavioral problems.

Sensory-Environmental Challenges

Although there have not been large-scale studies confirming that autistic females experience more sensory issues than autistic males (Tavassoli, Miller, Schoen, (p. 300) Nielsen, & Baron-Cohen, 2014), many authors have described daily challenges in relation to sensory environments (Grandin, 2008; Lawson, 1998; Williams, 1992). These challenges can involve over-sensitivity, under-sensitivity, or idiosyncratic responses to sounds (e.g., noise), light (e.g., brightness or color), smells, touching, texture of clothes or foods, pain, temperature, or interpersonal space that involves many sensory modalities (McKibbin, 2015). Negative sensory responses can result in barriers for daily functioning and social participation. Coping through tolerating but without adequate environmental modification can be a major reason for meltdowns, especially those not easily understood by others, unless all possible contributing factors are considered.

Mental Health Challenges

Co-occurring mental health challenges are common in individuals with autism. In general, upwards of 70% of autistic individuals have concurrent medical, developmental, or psychiatric diagnoses (Lai, Lombardo, & Baron-Cohen, 2014) (see also Chapter 2 of this book). Psychiatric comorbidities in individuals with autism are likely to follow a pattern of development similar to those in neurotypical individuals, but with substantially higher incidence and prevalence across all ages (Croen et al., 2015; de Bruin, Ferdinand, Meester, de Nijs, & Verheij, 2007; Hofvander et al., 2009; Joshi et al., 2013; Lugnegard, Hallerback, & Gillberg, 2011, 2012; Lundstrom et al., 2015; Mattila et al., 2010; Salazar et al., 2015; Simonoff et al., 2008; Simonoff et al., 2013; Vaillancourt et al., 2017). In short, concurrent neurodevelopmental disabilities (e.g., learning disorders, attention-deficit/hyperactivity disorder [ADHD], early-onset obsessive-compulsive disorder [OCD], tic disorders, developmental coordination disorder), anxiety, and externalizing behavioral problems appear frequently from childhood. Childhood disorders tend to persist into adolescence and adulthood, although the overall prevalence and severity may drop slightly (Gray et al., 2012; Simonoff et al., 2013; Verheij et al., 2015). Meanwhile, new psychopathology such as depression and suicidal risk emerges significantly during adolescence (De-la-Iglesia & Olivar, 2015; Solomon, Miller, Taylor, Hinshaw, & Carter, 2012). This is followed by increased risk of major psychiatric disorders such as psychosis spectrum, bipolar disorders (Selten, Lundberg, Rai, & Magnusson, 2015), and substance-use related problems (Butwicka et al., 2017) in transitional-age youth and adults.

In preschool, girls with autism seem to be more likely than boys with autism to have a developmental trajectory characterized by high and stable internalizing problems, measured by the Child Behavior Checklist (Vaillancourt et al., 2017). Higher internalizing symptomatology in adolescent girls with autism compared with girls without autism has also been reported (Jamison & Schuttler, 2015). However, there is a lack of sufficiently powered clinical or epidemiological studies testing whether the prevalence and severity of mental health challenges differ in boys and girls with autism in late childhood and adolescence, except that one large clinic-based study found higher parent-reported emotional problems (measured by the Strengths and (p. 301) Difficulties Questionnaire) in female compared to male children and adolescents with autism (Mandy et al., 2012). Other smaller-scale studies in this age range converge to find higher levels of co-occurring emotional and behavioral problems in those with autism compared to those without, but male–female differences are not consistently reported—with some reporting no consistent difference (Howe et al., 2015; Pisula et al., 2016), yet others finding higher internalizing psychopathology in females (Oswald et al., 2016; Solomon et al., 2012).

In adulthood, neither small nor large-scale studies have found consistent male–female differences in the risks of having co-occurring psychiatric disorders (Croen et al., 2015; Gray et al., 2012; Hofvander et al., 2009; Lugnegard et al., 2011; Woodman, Mailick, & Greenberg, 2016). This is striking, given that the female-predominance of depressive disorders in neurotypical individuals is not seen in autistic adults, suggesting complex interactions between sex and gender, autism, and the risk of developing depression. Diagnostic overshadowing and missed diagnosis may also play a role, particularly in females, but this awaits empirical investigation.

Physical Health Challenges

Similar to the high co-occurrence of mental health challenges, children, adolescents, and adults with autism also have higher risks of developing concurrent medical disorders throughout the lifespan compared with individuals without autism (Croen et al., 2015; Jones et al., 2016; Kohane et al., 2012). In particular, females are more vulnerable than males (Jones et al., 2016). Considering female sex-specific physical health issues, adolescent girls and women with autism seem to have higher risks of developing hormone-related physical health issues than females without autism, including irregular menstrual cycles, dysmenorrhea, menorrhagia, delayed or early-onset puberty, hirsutism, polycystic ovary syndrome (Ingudomnukul, Baron-Cohen, Wheelwright, & Knickmeyer, 2007; Knickmeyer, Wheelwright, Hoekstra, & Baron-Cohen, 2006; Pohl, Cassidy, Auyeung, & Baron-Cohen, 2014), or even increased risks of ovarian cancer, although the absolute incidence is low (Chiang et al., 2015). Increased incidence of premenstrual syndrome has also been reported in women with autism and intellectual disability compared with intellectually disabled women without autism (Obaydi & Puri, 2008), as well as in women with autism without intellectual disability compared with neurotypical women (Pohl et al., 2014). Whether autistic women are at higher risk of also experiencing more severe premenstrual physical and mood symptoms remains to be examined, although clinical experience indicates this is plausible (Nichols, Moravcik, & Tetenbaum, 2009).

Gender-Related Issues and Identity Development

Some authors describe the experiences of girls and women with autism regarding long-standing feelings of “not fitting in” with neurotypical gender stereotypes and (p. 302) the unspoken gendered expectations in the sociocultural contexts in which they grow up (Hendrickx, 2015; Kanfiszer, Davies, & Collins, 2017; McKibbin, 2015; Simone, 2010). Their concerns vary. Interview-based data show that some teenagers reflect a lot on sexual identity (Tierney et al., 2016). Some women with autism reject gender-stereotypical expectations, while others have tried hard to fulfill such roles (Bargiela et al., 2016). In the scenario of making substantial efforts to fit in, some describe an experience of a sense of “lost identity” when trying to perform gendered feminine roles (Bargiela et al., 2016; Willey, 1999; Williams, 1992).

Increased rates and variation of non-binary gender and non-heterosexual orientation in girls and women with autism have been reported in quantitative studies, suggesting that their gender and sexuality-related developmental tasks may involve, not only gender expression, but also sexual orientation and gender identity (Dewinter, De Graff, & Begeer, 2017). Compared with neurotypical women, autistic women are more likely to report long-standing non-stereotypical feminine gender expression (Bejerot & Eriksson, 2014; Dewinter et al., 2017; Ingudomnukul et al., 2007; Pohl et al., 2014); bisexual, homosexual, asexual, or other sexual orientations (Bejerot & Eriksson, 2014; Dewinter et al., 2017; Ingudomnukul et al., 2007; Pohl et al., 2014); variant gender identity (Dewinter et al., 2017; Lai, Ruigrok, et al., 2016); or even gender dysphoria (Pohl et al., 2014). Higher-than-expected co-occurrence of variant gender identity and autism (irrespective of sex) has been summarized from the limited empirical literature so far (Glidden, Bouman, Jones, & Arcelus, 2016; Van Der Miesen, Hurley, & De Vries, 2016), contributing to an expert consensus suggesting the need for assessment of potential gender dysphoria in individuals with autism (and vice versa) in clinical settings (Strang et al., 2016). The extent to which biological females and males differ on these aspects is still unknown, but from current literature, girls and women with autism not infrequently describe experiencing developmental challenges directly related to gender expression, and possibly also sexual orientation and gender identity in some individuals.

Study on the nature of these developmental issues in individuals with autism, in particular girls and women, is still in its infancy. Not fitting in with stereotypical gender expression may be largely due to prevalent gender stereotypes in the specific sociocultural context, meaning that in girls and women with autism, their sense of incongruence may be reduced if the sociocultural environment becomes more inclusive and less rigid on gendered expectations. Psychologically, the sense of “not fitting in” may further contribute to increased reflections on one’s gender identity and sexual orientation, especially during adolescence (Kanfiszer et al., 2017; Tierney et al., 2016). On the other hand, shared biological mechanisms may also play a role in explaining the higher co-occurrence of autism and gender-neutral or gender-incongruent behavior and role expressions. These mechanisms may also contribute to both the emergence of autism and more varied sexual orientation and gender identity, especially in biological females. In sum, variant gender and sexuality experienced by some girls and women with autism may well be a combination of both (1) the interaction between their autistic characteristics and the binary-gendered sociocultural contexts, and (2) specific innate mechanisms (p. 303) that predispose them to a higher co-occurrence of autism and variant gender identity and sexual orientation.

Suggestions for Assessment

Improving the Identification of Autism in Females

Efforts have been made to amend existing instruments to better capture the presentment of females (Kopp & Gillberg, 2011). However, so far, there has been no published research on specific new assessment instruments (and coding algorithms) or modified diagnostic processes that are shown to have improved diagnostic accuracy for females. The general framework of assessment and diagnosis of autism should be the same irrespective of one’s sex or gender, based on: (1) the a priori sex- and gender-independent high-level and abstract domains that define an autism diagnosis (i.e., early-onset, long-standing, and functionally impairing social-communication difficulties and RRSB) (Lai et al., 2015); and (2) the psychometric evidence so far that commonly used standardized instruments show measurement invariance and comparable factor structure across males and females (Frazier & Hardan, 2017; Grove et al., 2017). The best practice to improve diagnostic accuracy, especially to increase the sensitivity of recognizing the “female phenotype” of autism, relies on: (1) better recognition of behavioral exemplars of autism that are more often present in females than in males, and (2) efforts to reduce the impact of preexisting gender stereotypes held by diagnosticians. Specific suggestions for assessments, especially for girls and women not previously diagnosed early in life, are outlined here.

  1. 1. In forming the differential diagnosis in girls and women with autism (as in boys and men with autism), information regarding behavioral characteristics across different settings needs to be collected from multiple informants, including the individuals themselves (both from clinical observation and the individuals’ self-reflection), caregivers who can provide an accurate developmental history and information regarding childhood presentation, and other persons who can provide independent observations of the individual in various settings (e.g., in school, in workplace, in the community).

  2. 2. When making decisions regarding whether a reported behavioral feature should be considered as reflecting a core characteristic of autism, it is critical to evaluate potential observer bias associated with gendered expectations and gender stereotypes.

  3. 3. The diagnostician should be familiar with the behavioral exemplars and characteristics that may be more likely to be seen in females with autism (as summarized earlier in the chapter), in order to improve sensitivity in recognizing autistic characteristics in females. In particular, instances of camouflaging should be examined and understood, and one (p. 304) should avoid “ruling out” autism based on the presence of the following characteristics:

    • Direct eye contact or well-modulated eye gaze: These could be learned and be part of camouflaging, so a comprehensive examination of different nonverbal expressive skills, the coordination of different nonverbal and verbal skills used for communication, the understanding of others’ nonverbal expressions, and changes of these skills in the course of development, is key to accurately capturing difficulties in nonverbal communication.

    • Social motivation, friendship, or romantic relationship: Females with autism can be socially inclined to approach others, to develop friendships, and to form romantic relationships, so the assessment should focus on the individual’s capacity for participation in social activities, any difficulties with mentalizing or tracking social cues in non-routine social interactions, the frequency and extent of social overload, the pattern of interaction with friends and partners, and the main difficulties encountered in friendships and romantic relationships.

    • Affective empathy: It has been commonly but wrongly assumed that individuals with autism “lack empathy”—in fact, what characterizes autism is difficulties with intuitively understanding other’s thoughts and related emotions (i.e., mentalizing or “cognitive empathy”), but many individuals with autism, in particular females, have intact or even heightened “affective empathy” and prosocial emotions (Deschamps, Been, & Matthys, 2014; Lai & Baron-Cohen, 2015; O’Nions, Viding, Greven, Ronald, & Happe, 2013).

    • Imagination: Based on DSM-5’s conceptualization, the presence of imagination does not rule out an autism diagnosis, and some females with autism even show rich and vivid imagination—imaginative capacity therefore should be considered as reflecting individual differences or as a stratification marker for autism, rather than a pathognomonic feature.

      Finally, the diagnostician should be aware that, in some females, the contents of their restricted interests can be “non-classic” and aligned with social and gendered norms. Careful examination of the intensity, time devoted, exclusivity, and accompanied level of pleasure and functional impacts is the key to accurate recognition. In a nutshell, autistic characteristics in females without intellectual disability can be subtler (American Psychiatric Association, 2013) or partly different in manifestation, therefore requiring specific exploration.

  4. 4. Not seeing cardinal autistic behavioral exemplars during a single interview process (e.g., an ADOS-2 session) should not be taken as a primary reason to rule out autism. It is not uncommon to find that such difficulties have been consciously or even automatically masked (as the individual is so used to camouflaging during social interactions) (p. 305) and only reveal themselves after an extended period of interaction, when social overload occurs, or when the social situation is enriched with unpredictability. Characteristics of autism in social settings may only appear after multiple interview sessions or an extended interview process. Acquiring information about behaviors and adaptation across different social settings and from multiple informants, and across different stages of life, is key to improve sensitivity of assessment.

  5. 5. An accurate diagnosis for late-identified autism particularly relies on the individual’s self-report and recollection of earlier social-communication difficulties and RRSB. At the same time, this has to be contrasted with clinical observation and other informant reports if these are available. When assessing self-reported characteristics, it is important to take into account the individual’s capacity for self-reflection and consider the development of self-concept and self-esteem. Reporting a lack of social-communication difficulties may in some cases be a result of inadequate appreciation of social experiences or limited self-reflective abilities. Also, as in the case of neurotypical individuals, it is not uncommon for a teenager to initially under-report difficulties owing to the need to maintain self-esteem.

  6. 6. It is not uncommon that the social function of an individual with previously unrecognized autism varies and fluctuates over the course of the lifespan. The diagnostician should assess not only the best instances of adaption, but both successful and difficult adaptations, in order to fully understand the functional impairments associated with characteristics of autism. It is also important to acknowledge that adaptive functioning is a product of the individual’s abilities and the environmental demands, and is not always associated with symptoms or characteristics of autism (Weitlauf, Gotham, Vehorn, & Warren, 2014). What informs the decision of a diagnosis and personalized support does not solely come from the recognition of autistic symptoms, but is rather more closely associated with the person–environment fit across different contexts and stages of life (Lai & Baron-Cohen, 2015).

Assessing Specific Challenges Experienced by Females with Autism

The assessment of mental and physical health should be an integral part in the clinical assessment for anyone who has been diagnosed with autism, or who is suspected to be on the autism spectrum (Ameis & Szatmari, 2015; Lai et al., 2014). As summarized earlier in the chapter, mental health challenges seem to follow a developmental trajectory similar to those in neurotypical individuals, but with substantially higher likelihood of occurring. Male–female differences in the likelihood of developing mental health challenges have not been consistently found, yet some studies indicate that, in childhood and adolescence, girls are more likely to suffer from internalizing psychopathology than boys (Mandy et al., 2012; Oswald (p. 306) et al., 2016; Solomon et al., 2012; Vaillancourt et al., 2017), therefore requiring particular clinical attention and support.

Diagnostic overshadowing has been proposed as a mechanism contributing to potential misdiagnosis or late identification of females with autism (Gould & Ashton-Smith, 2011; Kopp & Gillberg, 1992; Lai & Baron-Cohen, 2015; Luciano et al., 2014; Mandy & Tchanturia, 2015; Trubanova et al., 2014). However, so far there has been no population-level investigation that clearly maps common misdiagnoses and co-occurring diagnoses, and how they may have an impact on diagnosing autism in females. Clinicians have anecdotally reported examples of missed autism diagnosis in females hidden under the previously given diagnoses of anxiety disorders, personality disorders, or eating disorders (Luciano et al., 2014; Mandy & Tchanturia, 2015). Clarifying the complexity of co-occurring psychiatric conditions with possible underlying autism to prevent diagnostic overshadowing is a challenge that needs to be tackled.

Clinicians should also pay attention to female-specific physical and mental health issues (e.g., reproductive cycle-related issues, premenstrual syndrome, etc.) in order to provide timely assessment, referral, and intervention. Gender-related issues, as summarized earlier, should also be a focus of assessment in order to better understand the individual’s struggle in relation to the sociocultural context and how this affects one’s psychological development, identity formation, social adaptation, and well-being.

Suggestions for Support

One primary utility of confirming a diagnosis of autism is to provide a framework to better understand the social, emotional, communicative, and behavioral difficulties encountered by the individual (Lai & Baron-Cohen, 2015). In individuals who tend to be identified later in life, as in the case of many girls and women, they have often developed specific coping strategies to handle social demands. The assessment of specific adaptive functioning in light of ongoing environmental challenges, along with the person’s capabilities and coping strategies, will inform the choice of adequate supports (de Schipper et al., 2015; de Schipper et al., 2016). Individual characteristics and functional impairments vary greatly from person to person; therefore, support and intervention needs to be individualized (Loth, Murphy, & Spooren, 2016). For example, some individuals have strong social motivation, but their major challenge lies in difficulties with understanding intricate social interactions, rules, and cues; therefore, coaching for social interaction or social skills training might be the most immediately needed. Some individuals have a narrow window of capacity to handle a reasonable amount of social interactions, and can easily experience social (and/or sensory) overload or meltdowns if the duration or intensity of demands goes beyond this capacity window. Many females with autism describe the need for sufficient time alone to de-stress, especially after being in a social environment performing their social roles (Tierney et al., 2016). In these cases, the adjustment of the environment to find an adequate (p. 307) “dosage” of social-interpersonal exposure, followed by the facilitation of acquisition of alternative coping and relaxation skills to help de-stress, along with graded social exercise and exposure, may be the primary focus of support. In addition, many autistic females identify executive dysfunction as a major challenge they face in daily life (Baldwin & Costley, 2016), which is an area that requires development of novel support and intervention strategies.

So far, research does not indicate that the efficacy or effectiveness of current autism intervention or support programs (e.g., early intensive behavioral interventions, social skills training) varies significantly by sex or gender (e.g., McVey et al., 2017). Formal examination of sex- and gender-moderated efficacy or effectiveness is still lacking. Nevertheless, considering what we know so far about the unmet needs of and challenges faced by girls and women on the autism spectrum, some general principles may be helpful when designing individualized support plans.

First, optimizing the person–environment fit for the individual should be the primary aim of intervention and support, and this often involves altering the environment rather than only focusing on skill-building or modifying the individual’s autism-related characteristics (Lai & Baron-Cohen, 2015). The goal is to enhance the resilience of the individual—that is, having satisfactory developmental health in the face of adversity (here the diathesis of long-standing challanges associated with being on the autism spectrum)—which often involves the interaction of the individual and the environment (Szatmari et al., 2016). This resilience-based, or strengths-based approach (Mottron, 2017), which supplements the skill-building approach in most standardized, targeted interventions nowadays (Lai et al., 2014), aims at identifying the individual’s unique learning modes, strengths, and prior successful coping and achievements (Webster & Garvis, 2017), and using these to guide further modification of the environment as well as strengthening the individual’s skill set and confidence to explore outside her social and adaptive “comfort zones.” Many girls and women with autism possess strong social motivation, imitation skills, verbal/linguistic abilities, self-determination, and altruism—all are examples of strengths that could be leveraged.

Second, it is important to consider the influences of gendered sociocultural contexts. These contexts can be a double-edged sword when it comes to providing support to improve an autistic girl’s or young woman’s adaptation (Rose & Rudolph, 2006). On one hand, gendered contexts can be nurturing and protective for female children and teenagers. On the other, the heightened social demands and nuances of peer interactions, and different styles of aggression in female peer groups, especially during adolescence, may pose increased social challenges and stress for autistic girls and women. Personal characteristics that do not meet the stereotyped, gendered sociocultural expectations (e.g., females are expected to be more interpersonally sensitive and emotionally attuned than males) can be an additional source of stress or a reason for bullying in female and non-binary gender individuals with autism, and may lead to increased risk of mental health issues (Kreiser & White, 2014a; Rudacille, 2016). Sufficient awareness of the effects of (p. 308) gendered contexts, particularly the potential gender stereotypes explicitly or implicitly held by people providing supports (e.g., caregivers, teachers, clinicians), is necessary when designing and delivering adequate supports. Furthermore, the creation of an autism-friendly environment that also appreciates gender-related issues can be useful in alleviating the developmental challenges faced by girls, women, and non-binary gender individuals with autism. This will provide a more inclusive and respectful context for their gender expression, gender identity, and the development of sexual identity. Clinicians also need to be mindful of the higher likelihood of the presence of gender dysphoria, which requires timely and appropriate supports (Strang et al., 2016).

Third, several specific topics related to sex and gender require particular attention. Many researchers and females with autism have discussed the heightened risk for girls and women with autism to be taken advantage of and victimized sexually, particularly in close relationships, due to social naïveté, perceived passivity, and difficulties in mentalizing (i.e., accurately “reading” other’s intentions), especially in the ambiguous interpersonal interactions that are not uncommon in developing relationships (Bargiela et al., 2016; Hendrickx, 2015; Simone, 2010; Steward, 2013; Willey, 2011). The heightened risks of being victimized may also be related to reduced opportunities to acquire skills from peer groups, especially during teen years; furthermore, experiences of peer rejection at younger ages may predispose them to be “desperate” for acceptance, resulting in higher vulnerability to exploitation (Bargiela et al., 2016). The aims of supports should include acquiring the ability to be assertive and skills to “stay safe” while enjoying developing close relationships (or to make a conscious choice not to). Another specific topic is the childbearing experience, which may be challenging for many females with autism. Small numbers of qualitative studies have identified communicative and sensory challenges that childbearing autistic women often experience, indicating opportunities for environmental modification in order to provide better care and support (Gardner, Suplee, Bloch, & Lecks, 2016; Rogers, Lepherd, Ganguly, & Jacob-Rogers, 2017). Overall, sex- and gender-related specific life challenges in autism are gradually getting more attention, but evidence-based specific supports remain to be established.

There is an urgent need to develop evidence-based, developmentally informed, and manualized intervention and support programs that address the specific needs and issues frequently encountered by girls and women with autism. This does not lead to sex- or gender-segregated intervention; on the contrary, the ultimate goal is to develop sex- and gender-informed support strategies that benefit individuals of all sexes and genders on the autism spectrum. One example of such an approach is the Girls Night Out program, which targets improving the social-emotional health of adolescent girls with autism based on social learning theory and cognitive-behavioral theories, through both skill-building and a naturalistic peer-support environment, by including equal numbers of autistic girls and trained, typically developing peers (Jamison & Schuttler, 2017). Specifically, this curriculum not only aims to improve skills in social relations, but also focuses on improving self-care and self-determination in social competence and (p. 309) self-perception, fitting the resilience/strengths-based and sex/gender-informed principles outlined herein.

Conclusion

Although autism may have been historically under-recognized in girls and women, stakeholder community and clinicians’ observations have driven increasing research, providing continuously improving understanding of how the behavioral presentation of autism may be moderated by sex and gender, and how the diagnostic process for autism may be biased due to gendered sociocultural contexts. Specific challenges and needs of girls and women are also being increasingly investigated. However, there is still a huge knowledge gap and a lack of systematic empirical research to clarify sex- and gender-moderations of the behavioral presentation of autism, the mechanisms by which sociocultural and gendered contexts influence the identification of autism, and sex- and gender-related developmental and health challenges. Research and innovation are much needed to develop evidence-based intervention and support strategies that are sex- and gender-informed and improve adaptation and quality of life for individuals of all sexes and genders. Meanwhile, clinicians should be mindful of adopting a sex- and gender-informed approach in providing assessment and support for individuals on the autism spectrum, in particular for girls and women. This approach will address the many previously unseen and still unmet needs of girls and women on the autism spectrum.

Study Questions

  1. 1. Describe potential explanations for under-recognition of autism in females.

  2. 2. Describe common daily-life challenges experienced by girls and young women on the autism spectrum.

  3. 3. Summarize how an assessment can be optimized to improve the sensitivity of capturing autism characteristics and adaptive functioning in the individual, across different sexes and genders.

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Notes:

1 In this chapter we refer to “girls and women” as people who were identified as females at birth based on biological sex characteristics, while recognizing that they may not identify with this gender. We also recognize that some people prefer to be called an “autistic person” or a “person on the (autism) spectrum,” rather than a “person with autism.” We use these terms interchangeably to encompass all of these ways of description.