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Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum
Abstract
There is increasing awareness that we are missing girls and women on the autism spectrum and the assumption that many more boys and men have autism or Asperger syndrome is being challenged. There is a need to consider the extent to which females on the autism spectrum present differently from males and to explore whether they have different needs. This would then have implications for the systems, instruments and processes used for diagnosis and for the types of interventions offered. This paper makes a start at investigating this whole area and gives some evidence on the potential differences between males and females with autism. Suggestions are made on how diagnostic questions might be altered to identify some females on the autism spectrum who might otherwise be missed. The Editors of GAP welcome other papers on this topic.
... It is apparent that there exists a gender bias in autism diagnosis with autistic females being missed, misdiagnosed or diagnosed later in life (Carpenter, Happé, and Egerton 2019;Gould and Ashtown-Smith 2011). There is evidence to suggest that the disparity in diagnosis places the individual at risk of not getting access to the necessary support (Gould and Ashtown-Smith 2011), and can have significant implications for development and life outcomes (Taylor and DaWalt 2020). ...
... It is apparent that there exists a gender bias in autism diagnosis with autistic females being missed, misdiagnosed or diagnosed later in life (Carpenter, Happé, and Egerton 2019;Gould and Ashtown-Smith 2011). There is evidence to suggest that the disparity in diagnosis places the individual at risk of not getting access to the necessary support (Gould and Ashtown-Smith 2011), and can have significant implications for development and life outcomes (Taylor and DaWalt 2020). This paper will consider the gender bias in autism with reference to the education context. ...
... There is some debate around the notion of whether there exists a female phenotype of autism or are the differences in presentation due to the socialisation of females compared to males (Kreiser and White 2014). While it is beyond the scope of this paper to explore this debate, it is apparent that autistic girls can exhibit a different presentation of autism compared to autistic boys (Gould and Ashtown-Smith 2011;Lai et al. 2011). It has been posited that some autistic girls experience a more internal presentation of autism whereby their autistic traits are more inconspicuous compared to a more 'stereotypical' presentation (Kirkovski, Enticott, and Fitzgerald 2013;Rivet and Matson 2011;Wassell and Burke 2022). ...
... In relation to gender, there is a wide differentiation in terms of prevalence, which has been maintained over time, and there has been a predominance of up to three to four times more males than females with ratios between 3:1 and 4:1 in recent years (Cheslack-Postava & Jordan-Young, 2012;Gould & Ashton-Smith, 2012;Loomes et al., 2017), currently amounting to 4.3:1 (2.8% in men and 0.65% in women) (Morales Hidalgo et al., 2021) or even, in some contexts, 5.81:1 (Young et al., 2021). This suggests a possible influence of this biological factor on ASD (Havdahl et al., 2021;Jiang et al., 2022) since, as stated by Burrows et al. (2022) the imbalanced sex ratio in ASD may represent a real phenomenon, but it may also stem from the presence of measurement bias in both the clinical criteria used for diagnosing ASD and/or in the measures designed to capture ASD symptoms (p. ...
... Multiple studies confirm a higher prevalence of ASD in the male population compared to the female population (Gould & Ashton-Smith, 2012;Mandy et al., 2018;Ruggieri & Arberas, 2016). The historical male preponderance in the prevalence of ASD has had an impact on the scientific knowledge about this disorder in women in terms of its clinical presentation, its genetic architecture, and the structural basis of the brain (Calderoni, 2023), and it has continued to our day. ...
... The historical male preponderance in the prevalence of ASD has had an impact on the scientific knowledge about this disorder in women in terms of its clinical presentation, its genetic architecture, and the structural basis of the brain (Calderoni, 2023), and it has continued to our day. There is a predominance of males who have been diagnosed with ASD, a fact that is reinforced in this study, which shows that this personal factor represents a risk and from which several conclusions could be drawn: (a) a possible under-diagnosis or under-representation of the female population in the diagnosis of this pathology (Gould & Ashton-Smith, 2012;Mandy et al., 2018); (b) a better early development of women with ASD at a linguistic level (Fortea Sevilla et al., 2015;Ruggieri & Arberas, 2016) and (c) the need to provide more focused and earlier attention to the male population as a sector at greater risk of experiencing this pathology (Brugha et al., 2011). Achieving greater and better early identification and diagnosis in individuals with ASD may contribute to improving the chances that children will benefit from intervention and lessen the burden on concerned parents (Zwaigenbaum et al., 2013). ...
p style="text-align: justify;">The current understanding of autism spectrum disorder (ASD) as an alteration of neurodevelopment requires deepening in the causes that originate it. This study aims to investigate the relationship between the presence of ASD in subjects aged 2-22 years and some related biological factors (sex/gender, age, and body mass index). A quasi-experimental study, with a cross-sectional retrospective design, was conducted on 209 subjects (n = 111 with ASD and n = 98 neurotypical) who were applied to the GARS-2 test in three areas: communication, social interaction, and stereotyped behaviours between 2016-2021. The risk factors identified are related to early age (OR = 2.27, 95% CI = 1.30-3.96), being male (OR = 2.67, 95% CI = 1.41-4.68) and having underweight (OR = 2.03, 95% CI = 1.09-3.80). Differences in stereotyped behaviours (OR = 1.10, 95% CI = 1.05-1.14), functional communication (OR = 1.13, 95% CI = 1.08-1.17) and social interaction (OR = 1.11, 95% CI = 1.08-1.15), were found, being at risk as soon as scores related to ASD diagnosis. In sum, rigorous and multidimensional understanding analysis among specialists regarding people with ASD allows to evaluate the development of the set of alterations and key variables to provide support and assistance to their quality of life.</p
... The representativeness of the small female sample in the validation studies can also be questioned, given that girls are often referred for assessment much later than boys, suggesting that for girls under age 4 to be identified they may be extreme, outlying cases. 15 When an older girl is assessed using the ADI-R, it is likely that her presentation, when compared to that of a small sample of young boys, will not match the ADI-R interpretation of the ASC profile and therefore she will not be identified as ASC. As outlined earlier, DSM classification criteria for autism was established upon findings from a small, mainly-male sample. ...
... 40 Specific characteristics have been noted such as girls being 'clingy 4 ' rather than exhibiting 'extreme autistic aloneness' and while having similar topics of interest, they have a different quality and intensity compared to non-ASC girls. 18,15 In response to the assessment limitations, Lai et al. created an "unusual sensory response" composite score from three ADI-R items which addressed sensory behaviours and found that females had more unusual sensory responses than males. 40 ...
... 41 Gould and Ashton-Smith suggest that females with ASC actively examine and imitate others in order to initiate social contact, leading observers to believe that they have innate social skills. 15 Lai et al. reported that most of the females in their ASC adult clinics only revealed their social functioning difficulties through self-report and they are not immediately apparent from observation, evidencing the effectiveness of such camouflage. 40 Blending in may also be reinforced in gendered social environments. ...
... Autism research has proposed that higher rates of camouflaging may be another explanation for the diagnostic disparities, since autistic girls might appear to have better social skills due to practicing and scripting behaviors from other people. [13][14][15][16][17] Camouflaging is a social strategy to cope with social situations by blending in with neurotypical individuals or hiding autistic traits, 15 which inherently impacts how one's internal characteristics are displayed externally on a diagnostic measure. While camouflaging is prevalent in both autistic males and females, camouflaging's complex nature creates an unclear picture of whether autistic females camouflage more than males, 17 considering camouflaging also should not be conflated with the impacts of the female protective effect. ...
... 5 Some research suggests that societal expectations for female-identifying individuals have caused them to refrain from getting a diagnosis due to increased pressures to fit in and socialize with neurotypical traits. 13,14,16 As per traditional gender norms, this is rooted in the notion that womanhood is associated with emotionality, sensitivity, and nurturing, while manhood is often associated with logic, toughness, and stoicism. 18 Autistic female individuals, however, tend to present to neurotypical populations as socially awkward or assertive early on, which often leads to friends and family ostracizing or constantly criticizing through avenues such as relational aggression. ...
... Se ha estudiado que esta condición se detecta tardíamente en mujeres o estas suelen recibir diagnósticos equivocados, lo cual puede deberse a que los criterios diagnósticos no suelen aplicarse de manera adecuada al evaluar a niñas, adolescentes o adultas, resultando en diagnósticos erróneos o tardíos y observándose "trastornos" o comorbilidades (que, en realidad, no son más que coocurrencias) 6 . Esto ocurre porque las dificultades presentes en este grupo pasan desapercibidas, con las implicancias negativas que podrían derivarse de sesgos culturales y de género (Leiva, 2022;Lai et al., 2015;D'Agostino, 2014;Gould y Ashton-Smith, 2011). Además, se ha considerado que el espectro autista tradicionalmente se asocia con los hombres (Gould y Ashton-Smith, 2011), generando un vacío en la detección de niñas 6 Respecto a ello, Paula (2013Paula ( , 2021 indica que el concepto de Comorbilidad en los Trastornos del Neurodesarrollo, donde las patogénesis no son claras, resulta ambiguo; de ahí que hablar de Concurrencia hace referencia a la presencia de diversos síntomas en las personas con la CEA, debido a la falta de evidencia sobre la patogénesis de ellos y alude a la idea de que estos 'síntomas' serán más bien conjunta a la condición, es decir, son mutuamente existentes. ...
... Esto ocurre porque las dificultades presentes en este grupo pasan desapercibidas, con las implicancias negativas que podrían derivarse de sesgos culturales y de género (Leiva, 2022;Lai et al., 2015;D'Agostino, 2014;Gould y Ashton-Smith, 2011). Además, se ha considerado que el espectro autista tradicionalmente se asocia con los hombres (Gould y Ashton-Smith, 2011), generando un vacío en la detección de niñas 6 Respecto a ello, Paula (2013Paula ( , 2021 indica que el concepto de Comorbilidad en los Trastornos del Neurodesarrollo, donde las patogénesis no son claras, resulta ambiguo; de ahí que hablar de Concurrencia hace referencia a la presencia de diversos síntomas en las personas con la CEA, debido a la falta de evidencia sobre la patogénesis de ellos y alude a la idea de que estos 'síntomas' serán más bien conjunta a la condición, es decir, son mutuamente existentes. y mujeres, cuando se reporta que la proporción es de 3.2 niños por cada niña (Loomes et al., 2017). ...
Las investigaciones de la Condición del Espectro Autista han sido principalmente biomédicas, plasmadas en discursos oficiales como DSM-5 o CIE-11 que establecen diagnósticos categoriales formados por criterios unilaterales que no consideran la experiencia propia del colectivo y la expresión dinámica de esta condición, dificultando su identificación oportuna y certera en mujeres. De ahí la necesidad de investigar: ¿Cuáles son las experiencias diagnósticas de mujeres chilenas que forman parte del colectivo del Espectro Autista respecto de su condición con las que pueden contribuir a los criterios diagnósticos del DSM-5? Este estudio se sustentó en el Enfoque Cualitativo, con un Alcance Exploratorio-Descriptivo y Diseño Fenomenológico, realizando Focus Group a mujeres autistas de distintas agrupaciones y comunidades considerándolas expertas por experiencia y protagonistas de su propia historia; del Análisis Fenomenológico-Interpretativo se desprenden como resultado las contribuciones de las mujeres autistas para el proceso diagnóstico que amplían la visión diagnóstica de la Condición del Espectro Autista, aportando sus orientaciones alternativas previniendo diagnósticos rígidos, erróneos y/o tardíos en mujeres, como por ejemplo, considerar que en mujeres la interacción social ha comprendido un esfuerzo bajo estrategias aprendidas y camuflaje. Así, se concluye la necesidad de criterios diagnósticos diferenciadores para mujeres, para un diagnóstico temprano de las mujeres, basado en la formación sobre autismo en mujeres y su visibilización para derribar estigmas y relevar la CEA como una necesidad de cambios sociales.
... [22][23][24]26,27,51 For example, some of the strategies used by autistic adults to minimise social difficulties may be misconstrued as symptoms of social anxiety, 2,52 whereas overlapping features between autism and ADHD in domains such as social functioning 19,20 could allow autistic traits to be misinterpreted as symptoms of inattention and/or hyperactivity. 51,53,54 There is also increasing clinical Articles recognition that recurrent and/or treatment-resistant depression may potentially reflect an underlying neurodevelopmental condition, such as autism, missed due to overlapping clinical symptoms (e.g., social withdrawal). 55 Lack of awareness of the presentation of autism in adulthood may also contribute to misdiagnoses of psychiatric conditions in adults with undiagnosed autism. ...
... 6,29,57 This raises the likelihood that neurodevelopmental diagnoses will be ruled out and autistic traits misattributed to a different psychiatric diagnosis. 11,18,53 Finally, camouflaging autistic traits may also hinder the accurate identification of autism in adults, particularly in autistic women. 58 These processes may produce a mismatch between underlying autistic characteristics and external observable behaviour and therefore mask autistic traits during the diagnostic process. ...
Background
Many autistic people, particularly women, do not receive an autism diagnosis until adulthood, delaying their access to timely support and clinical care. One possible explanation is that autistic traits may initially be misinterpreted as symptoms of other psychiatric conditions, leading some individuals to experience misdiagnosis of other psychiatric conditions prior to their autism diagnosis. However, little is currently known about the frequency and nature of psychiatric misdiagnoses in autistic adults.
Methods
Using data collected in the first half of 2019 from an ongoing longitudinal register of autistic adults in the Netherlands, this study explored the frequency of perceived psychiatric misdiagnoses before receiving an autism diagnosis. Gender differences were also explored. A sample of 1211 autistic adults (52.6% women, mean age 42.3 years), the majority of whom were Dutch and relatively highly educated, was evaluated.
Findings
Results showed that 24.6% (n = 298) of participants reported at least one previous psychiatric diagnosis that was perceived as a misdiagnosis. Personality disorders were the most frequent perceived misdiagnoses, followed by anxiety disorders, mood disorders, chronic fatigue syndrome/burnout-related disorders, and attention-deficit/hyperactivity disorder. Autistic women (31.7%) reported perceived misdiagnoses more frequently than men (16.7%). Women were specifically more likely than men to report perceived misdiagnoses of personality disorders, anxiety disorders, and mood disorders. Women also reported prior psychiatric diagnoses more often in general (65.8% versus 34.2% in men). Within the group of individuals with a prior diagnosis, perceived misdiagnoses were equally likely for men and women.
Interpretation
One in four autistic adults, and one in three autistic women, reported at least one psychiatric diagnosis, obtained prior to being diagnosed with autism, that was perceived as a misdiagnosis. Inaccurate diagnoses are linked to long diagnostic pathways and delayed recognition of autism. These findings highlight the need for improved training of mental health practitioners, in order to improve their awareness of the presentation of autism in adulthood and of the complex relationship between autism and co-occurring conditions. The current study constitutes a first step towards showing that autistic adults, and particularly women, may be at greater risk of experiencing misdiagnoses. Future studies based on larger, more representative samples are required, to replicate current findings and provide more reliable estimates of the overall frequency of misdiagnoses as well as the frequency of misdiagnoses for specific psychiatric conditions.
Funding
This study was made possible by funding from the 10.13039/501100001826Netherlands Organisation for Health Research and Development (ZonMW), project number 60-63600-98-834.
... Finally, camouflaging may result in missed or late diagnosis, as well as a lack of supports and services (Gould & Ashton-Smith, 2011;Kirkovski et al., 2013;Lai et al., 2015). Camouflaging may lead to a false perception that an individual is doing well, while they may be experiencing significant difficulties internally (Harmens et al., 2022;Hull et al., 2017). ...
... Another proposed consequence of camouflaging is that it may result in missed or late diagnosis, leading to an absence of professional services and community support (Gould & Ashton-Smith;Kirkovski et al., 2013;Lai et al., 2015). Notably, none of the participants in the current study received an early autism diagnosis. ...
... While diagnoses such as Asperger's condition and high-functioning autism are no longer officially recognized, among children and adolescents without intellectual problems, the male-tofemale ratio falls between 6:1 (Fombonne, 2003) and 10:1 ( Baron-Cohen, 2004). According to some research, the lower reported prevalence among females (Gould & Ashton-Smith, 2011) can be the result of misdiagnosis or incorrect labeling of eating, anxiety, affective, or personality disorders in women (Young et al., 2018). The use of standardized diagnostic tests in females may be less likely to confirm an ASD diagnosis, when compared to their male peers, with calls for them to be adapted to give examples more characteristic of girls (Gould, 2017). ...
Autism spectrum disorder (ASD) is a major phenomenon influencing epidemiological, nosological, and social perceptions of neurodevelopmental and psychiatric disorders, alongside attention deficit hyperactivity disorder. Characterized by lifelong neurodevelopmental issues impacting social interaction and communication, ASD begins in early childhood. Over the past three decades, ASD prevalence has risen globally, concurrent with increased awareness and new intervention strategies. The establishment of World Autism Awareness Day in 2007 underscored the commitment of member nations to raise awareness and report intervention outcomes, aligning with the United Nations Sustainable Development Goals. Despite these efforts, effective ASD therapies remain inconsistently available, highlighting the need for multidisciplinary collaboration across social, health, and educational sectors to support individuals with ASD and their families. Current prevalence data indicates that approximately 1% of the global population is affected by ASD. The definition and diagnostic criteria for ASD have undergone significant evolution. Initially associated with schizophrenia, autism was refined by Kanner and Asperger in the midtwentieth century. Modern diagnostic frameworks, such as Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition and International Classification of Diseases 11th Revision, define ASD based on persistent deficits in social communication and interaction, as well as restricted, repetitive behaviors and interests. These criteria aim to encompass the diverse manifestations of autism, from severe impairments to high-functioning forms. The expansion of the autism spectrum to include subthreshold ASD and autistic traits carries significant implications for research, therapy, and resource allocation. The inclusion of these subthreshold conditions raises concerns about their clinical validity and the potential for misdiagnosis. While acknowledging the dimensional nature of autism, it is vital to distinguish between significant impairments and traits that overlap with typical personality variations. This nuanced approach is crucial to provide appropriate support and resources for individuals with ASD and to prevent overdiagnosis.
How to quote this chapter: Bertelli, M.O., Bianco, A., Boniotti, V., Chaplin, E. (2025). Definition, Diagnosis, and Prevalence of Autism Spectrum Disorder. In: Bennett, G., Goodall, E. (eds) The Palgrave Encyclopedia of Disability. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-031-40858-8_229-1
... This is perhaps even more the case for the people in these studies, almost all of whom were women, as most of them did not know they were autistic when they developed AN. Research highlights gender differences in how autism can be expressed, often referred to as the female autism phenotype (Gould and Ashton-Smith 2011;Hull, Petrides, and Mandy 2020). This has led to women being more at risk of being undiagnosed, thought to be partly due to a male bias in current screening and diagnostic tools (Dworzynski et al. 2012;Loomes, Hull, and Mandy 2017). ...
Objective
To synthesise qualitative findings on the autistic experience of restrictive eating disorders in order to identify common themes and use this to inform future research on the development of more effective care.
Method
This systematic review was pre-registered on PROSPERO (CRD42023434116) and followed PRISMA guidelines. CINAHL, PsycINFO, Medline, Embase, Web of Science and Global Health databases were searched. Studies were included if they contained qualitative data detailing the autistic experience of restrictive eating disorders from autistic people, carers or healthcare professionals. The Critical Appraisal Skills Programme was used to assess quality of studies. Recurring themes were identified via thematic synthesis.
Results
Nine studies met the inclusion criteria, all focused on anorexia nervosa. Four themes arose from the analysis: (1) the relationship between autism and restrictive eating; (2) the journey to self-understanding; (3) experience of eating disorder services; (4) suggested treatment adaptations.
Conclusion
Findings suggest a broad range of mechanisms underlying the development and perpetuation of anorexia nervosa that are related to autism and are not consistently acknowledged and addressed in current care provision. This emphasises the need for more research into developing adapted or novel interventions for autistic people with eating disorders, as well as training programmes for clinicians.
... Although autistic women may be better at faking neurotypicality in social exchanges, they also appear to face a penalty in the form of higher levels of stress, anxiety, exhaustion, and isolation (Baldwin & Costley, 2016;Gould & Ashton-Smith, 2011). Importantly, there is a strong link between applicant anxiety and selection outcomes such as interview performance and recommendation intentions, a relationship that is further exacerbated by exhaustion (McCarthy et al., 2021). ...
Although more organizations are seeking autistic applicants, autistic people remain in an unemployment crisis. This may be due in part to job interviews, which often implicitly evaluate relational and social skills—an area with which many autistic people struggle. To determine how to better support autistic applicants, we conduct a mixed methods study to identify, from their own perspective, the accommodations that would have the greatest impact on autistic individuals’ interview anxiety and performance. Additionally, we examine differences in interview anxiety and preferred adjustments to the interview process between both autistic and allistic participants and intersectionally across gender. Findings revealed additive effects of neurotype and gender on interview anxiety, with autistic participants reporting higher anxiety than allistic participants, and women reporting higher anxiety than men. Interestingly, despite a small number of notable differences, there were far more similarities between groups regarding preferred interview adjustments. These findings suggest that many adjustments to the interview process may be helpful across neurotypes, although they are perhaps particularly beneficial for alleviating the comparatively higher anxiety levels experienced by autistic applicants. Overall, there is a need to consider how and whether current interview best practices (e.g., standardization and structure) can be adapted to facilitate the inclusion of diverse neurotypes across a range of individual differences. As a starting point, we offer practical guidelines for managers wishing to improve the interview process for autistic and allistic applicants alike and set a foundation for future research.
... RRBs sometimes manifest in less conspicuous ways in girls than in boys. While boys often have restricted behaviors and interests that revolve around objects, girls often have restricted behaviors and interests that focus on relationships, people, and animals (Gould & Ashton-Smith, 2011;Lai & Szatmari, 2020). Furthermore, autistic girls' restricted interests may align in content with the interests of their neurotypical, same-sex peers, making them less obvious than those of their male counterparts (Kreiser & White, 2014). ...
Clinician and caregiver reports of autism features are both integral to receiving an autism diagnosis and appropriate intervention, yet informant discrepancies are present in clinical practice and may differ by demographic characteristics of the child and family. The present study examined how clinician–caregiver discrepancies in ratings of a child’s autism-related behaviors relate to a child’s sex at birth, age at first diagnosis, and amount of intervention received. Participants were 280 children (76.8% male, 67.9% White), 6–11 years old ( M = 8.5 ± 1.6), with a diagnosis of autism spectrum disorder. Variable-centered and person-centered approaches were used to examine relationships between standardized clinician–caregiver discrepancy and participant characteristics. Both analytic approaches indicated that clinicians rated autism-related behaviors lower than caregivers for females and higher than caregivers for males. In addition, lower clinician ratings of autism features, relative to caregiver ratings, were associated with older age at diagnosis and fewer hours of intervention. Findings underscore the importance of incorporating multiple informants, especially caregivers, in the diagnostic process and developing diagnostic procedures sensitive to the female autism phenotype to facilitate diagnosis, intervention, and subsequent development.
Lay abstract
In some cases, a clinician’s perceptions of a child’s autism-related behaviors are not the same as the child’s caregiver’s perceptions. Identifying how these discrepancies relate to the characteristics of the child is critical for ensuring that diagnosis procedures are unbiased and suitable for all children. This study examined whether discrepancies between clinician and caregiver reports of autism features related to the child’s sex at birth. We also explored how the discrepancies related to the age at which the child received their autism diagnosis and how much intervention they received. We found that clinicians rated autism features higher than caregivers for boys and rated autism features lower than caregivers for girls. In addition, lower clinician relative to parent ratings was related to being diagnosed at an older age and receiving less intervention. These findings suggest that there is more to learn about the presentation of autism-related behaviors in girls. When caregiver and clinician ratings of autism features do not align, it may be important to consider caregivers’ ratings to obtain a more accurate picture of the child’s autism features and the support they may need.
... The overlapping symptoms [48,49] across these conditions make diagnosis challenging. Second, factors such as masking behavior, compensation strategies [50,51], and learned camouflaging [52] can conceal critical information about impairment, potentially leading to misdiagnosis. Additionally, although not directly related to ADOS-2 measurements, diagnoses of adults are often difficult because developmental reports from parents or caregivers are commonly absent. ...
This study explores the challenge of differentiating autism spectrum (AS) from non-AS conditions in adolescents and adults, particularly considering the heterogeneity of AS and the limitations ofssss diagnostic tools like the ADOS-2. In response, we advocate a multidimensional approach and highlight lexicogrammatical analysis as a key component to improve diagnostic accuracy. From a corpus of spoken language we developed, interviews and story-recounting texts were extracted for 64 individuals diagnosed with AS and 71 non-AS individuals, all aged 14 and above. Utilizing machine learning techniques, we analyzed the lexicogrammatical choices in both interviews and story-recounting tasks. Our approach led to the formulation of two diagnostic models: the first based on annotated linguistic tags, and the second combining these tags with textual analysis. The combined model demonstrated high diagnostic effectiveness, achieving an accuracy of 80%, precision of 82%, sensitivity of 73%, and specificity of 87%. Notably, our analysis revealed that interview-based texts were more diagnostically effective than story-recounting texts. This underscores the altered social language use in individuals with AS, a csrucial aspect in distinguishing AS from non-AS conditions. Our findings demonstrate that lexicogrammatical analysis is a promising addition to traditional AS diagnostic methods. This approach suggests the possibility of using natural language processing to detect distinctive linguistic patterns in AS, aiming to enhance diagnostic accuracy for differentiating AS from non-AS in adolescents and adults.
... Além disso, os critérios diagnósticos tradicionais foram, em grande parte, desenvolvidos e validados com base em populações predominantemente masculinas, o que pode levar a uma menor sensibilidade dos instrumentos em detectar TEA em mulheres (Aronoff et al., 2016;Lai et al., 2011). Mulheres autistas tendem a exibir menos comportamentos repetitivos e interesses restritos visíveis, e podem ser mais hábeis em imitar comportamentos sociais apropriados, o que dificulta a identificação e a avaliação precisa dos sintomas (Gould & Ashton-Smith, 2011). ...
Tem ocorrido um aumento de indivíduos mais velhos diagnosticados com Transtorno do Espectro Autista (TEA), o que possibilita considerar o uso de instrumentos usados para tal finalidade. Diante disso, o objetivo principal deste estudo é apresentar as etapas iniciais de construção de duas medidas que visam auxiliar este diagnóstico. Foi realizada uma busca da literatura com enfoque em buscar medidas sobre sintomas associados ao TEA, com público-alvo adulto ou especificamente mulheres adultas. Em seguida, especialistas de neuropsicologia e psicologia avaliaram qualidades da clareza e pertinência dos itens destas medidas. A partir da análise estatística e dos comentários dos especialistas, foram revisados os itens e duas versões foram criadas. De forma geral, foram observadas pontuações adequadas ao considerar a perspectiva dos especialistas sobre a clareza e pertinência dos itens das escalas. Em síntese, indica-se que futuros desenvolvimentos de instrumentos com finalidades diagnósticas considerem essas diferenças de gênero, incorporando itens que capturem as manifestações mais sutis e específicas de TEA em mulheres.
... Recent research suggests that having a formal diagnosis of autism earlier in life may be helpful in developing a more positive self-concept (Gould & Ashton-Smith, 2011), but for some participants this wasn't the case and the sense of being 'other' that came with their diagnosis was distressing: ...
This book offers a critical discussion on the necessity for 'difficult conversations' to take place in education, drawing on studies from across the UK.The editors and contributors address three key questions:
- How can 'difficult conversations' be theorised? - What transformations in thinking and practice can occur through 'difficult conversations'? - What value do 'difficult conversations' have in enabling understanding and compassion between the diverse communities of today?
The chapters cover a range of topics including supporting children with SEND, parent and carer engagement, childhood trauma, race, disability, the climate emergency, and the researcher's positionality. The contributors draw on the theoretical work of bell hooks, Linda Alcoff, Paulo Freire, Victor Turner, Homi Bhabha, Nel Nodings, Melanie Nind, Emile Bojesen, Gayatri Chakravorty Spivak, Mathew Lipman, and other contemporary theories. They argue against the prevailing deficit-based perspectives about marginalized communities and invite deep thinking about the nature of oppression experienced in many spheres of education and therefore in our society. Ultimately, the book advocates for the empowerment and agency of anyone facing social inequalities through engagement in 'difficult conversations' as a means of transformation and social change.
... Some had experienced mental health difficulties, particularly anxiety and depression, which could be related to characteristics parents. The associated sensory and social challenges this posed, including the need to mask when in social settings, was particularly stressful, which again can contribute to increased mental health difficulties (Bradley et al., 2021;Gould & Ashton-Smith, 2011). The fourth subtheme 'mentally and physically exhausting' highlighted these challenges, including additional stressors which contribute to this, such as coping with a society ill-equipped to the needs of autistic people (Higgins et al., 2021). ...
Research on autistic women’s experience of parenthood is lacking. In this paper, two studies are presented. Study 1 comprised a small-scale qualitative study with autistic mothers (n = 9) in which their experiences of motherhood were explored using thematic analysis. The findings showed that participants identified a range of strengths, including connection with their children, high knowledge about childhood, a reflective style of parenting, good coping strategies, identifying with their autism diagnosis, and not caring what others thought. They also identified difficulties, including sensory challenges, coping with uncertainty and change, having to socialise, managing exhaustion, and not being taken seriously by professionals involved with their children. Guided by the findings of Study 1, and in collaboration with an advisory panel of autistic mothers, an online survey using mixed methods was completed by education and social professionals (n = 277) to investigate their understanding of, and attitudes towards, autism in women and mothers. Results showed high awareness and positive attitudes towards autism, but low levels of self-efficacy in working with autistic adults. Qualitative content analysis of open-ended questions shed light on challenges and rewards of working with autistic parents. The findings are discussed with reference to the double empathy problem (Milton Disability & Society, 27(6), 883–887, 2012) and implications for training of professionals.
... This may also be impacted by disparities in diagnosis for some autistic populations. Autistic people assigned female at birth (AFAB) are more likely to be unidentified or misdiagnosed, as the image of and clinical criteria for autism tend to reflect the stereotypical presentation often seen in boys and men (Bargiela et al., 2016;Gould & Ashton-Smith, 2011;Lockwood Estrin et al., 2021). ...
Previous research indicates that menopause can be an extremely difficult transition for some autistic people. This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research. Online focus groups and interviews were conducted with 24 autistic participants who lived in Canada (n = 13) or the United Kingdom (n = 11) and had experience with the menopausal transition. Transcripts were coded and analysed by four team members using reflexive thematic analysis. Four themes and eight subthemes were identified: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). Limitations include a potential sample bias towards difficult experiences of menopause. The majority of our sample had a late diagnosis or discovery of autism, and their experiences might not generalize to wider autistic populations. This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone.
Lay abstract
Previous studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada (n = 13) or the United Kingdom (n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.
... In this case, regular practice of cultural code-switching can have inherently negative side effects, including increased stress, anxiety, depression, and exhaustion or "autistic burnout" (Bargiela, Steward, and Mandy 2016;Cage, Di Monaco, and Newell 2018;Cage and Troxell-Whitman, 2019;Raymaker et al. 2020), or loss of identity and increased risk of suicidal thoughts (Cassidy et al. 2020). In this case, too, certain intersectional groups may feel differential social pressure to codeswitch-several studies have suggested that people who identify as women are more prone to code-switching than those who identify as men, leading women to be misdiagnosed and partially causing the gender gap in autism diagnoses (Gould and Ashton-Smith 2011;Dworzynski et al. 2012;Lai et al. 2015;Hull et al. 2019). ...
Cultural code-switching concerns how we adjust our overall behaviours, manners of speaking, and appearance in response to a perceived change in our social environment. We defend the need to investigate cultural code-switching capacities in artificial intelligence systems. We explore a series of ethical and epistemic issues that arise when bringing cultural code-switching to bear on artificial intelligence. Building upon Dotson’s (2014) analysis of testimonial smothering, we discuss how emerging technologies in AI can give rise to epistemic oppression, and specifically, a form of self-silencing that we call “cultural smothering.” By leaving the sociodynamic features of cultural code-switching unaddressed, AI systems risk negatively impacting already-marginalised social groups by widening opportunity gaps and further entrenching social inequalities.
... While it is clear that automatic tests cannot replace a comprehensive ASD assessment needed to evaluate and support an individual on the spectrum, any tools that can be used to screen children or assist the diagnostic process could speed up the process and may be especially beneficial to groups that are underdiagnosed with ASD, such as girls (e.g. Gould and Ashton-Smith, 2011;Dean et al., 2017) or children of colour (e.g. Durkin et al., 2017). ...
Entrainment is an inherently interactive phenomenon whereby speakers tend to become more similar over time, for example in their way of speaking or prosody. Prosodic entrain-ment is associated with positive social measures. Autism spectrum disorder (ASD), on the other hand, is associated with social difficulties, as well as unusual prosody. Taken together, this could suggest that individuals with and without ASD show differences in prosodic entrain-ment. Such a between-group difference would be a promising direction for automatic, speech-based diagnostic screening tools. The present study aimed to characterise prosodic entrain-ment in Slovak children with and without ASD using several measurements, to understand par-ticipants' entrainment behaviour on multiple levels. Results paint a complex picture of prosodic entrainment in this corpus, but no significant between-group differences in prosodic entrainment were found using both local and global methods, suggesting that prosodic en-trainment alone might not be the most promising direction for diagnostic screening tools.
... Women are more likely to use this strategy than men (Hull et al., 2019a). Therefore, it is recognized that camouflage may be a reason for difficulties and delays in the process of diagnosing women with ASC because of treating it as a manifestation of the female phenotype (Gould & Ashton-Smith, 2011;Kirkovski et al., 2013;Lai www.internationalsped.com Filip Nieradka & Joanna Kossewska & Baron-Cohen, 2015). ...
Autistic spectrum conditions (ASC) imply functioning difficulties in adulthood
due to the fact that they are caused by early-onset problems in social communication, unusually restricted repetitive behavior, and narrow interests. Living
with ASC might be difficult for young adults who face specific developmental
tasks, such as undertaking a professional career and engaging in social and civic
responsibilities. Because of the need to hide their dysfunctions and to conform
to social norms and conventions, affected people use camouflage strategies. In
order to improve their well-being and functioning, they may also use the regulatory function of self-esteem and gratitude.
The presented research carried out in Poland aimed to determine the relations between the intensity of camouflage, self-esteem, and gratitude and to
test for differences in the levels of these variables, taking into consideration
the intensity of the autism spectrum conditions (ASC). The study comprised
a total of 104 young adults (68 women = 65.38%, and 36 men = 34.62%)
who graduated from secondary or tertiary education aged between 19 and 35
years. The entire group was divided into two subgroups based on the screening
questionnaire Autism Spectrum Quotient (AQ10), a ten-item abridged version.
One subgroup consisted of 52 adults with a high intensity of autistic traits,
and the other consisted of individuals with a low intensity of autistic traits. The
results showed a correlation between the level of autism spectrum conditions
and camouflage. The level of camouflage was significantly higher in the subgroup with an increased severity of autistic traits compared with the subgroup
with a low severity. In contrast, no significant differences were detected between
the subgroups in the levels of self-esteem and gratitude, nor were any linear
correlations between spectrum conditions and self-esteem and gratitude found.
... How to teach autistic adults to ask for help is part of social skills training (49). Autistic individuals' reluctance to seek help has been noted when giving advice to police and has been identified in studies of the experiences of autistic college students (15,17), and late-diagnosed autistic women (50). However, in each of the articles just cited, asking for help was included in a list of other challenges, and was not the focus of systematic exploration. ...
Background
User-led autism discussion forums provide a wealth of information about autistic lived experiences, albeit oriented toward those who regularly use computers. We contend that healthcare professionals should read autism discussion forums to gain insight, be informed, and in some cases, to correct assumptions about autistic persons’ lives and possibilities. But experts may be dismissive of user-led forums, believing forums to be filled with myths, misinformation, and combative postings. The questions motivating our research were: Do online forums raise issues that are educational for clinicians and other stakeholders? Are forums useful for those who do empirical research?
Method
Content analysis was conducted on 300 posts (62,000 words) from Reddit, Quora, and Wrong Planet. Forums were sampled to reflect broad topics; posts were selected sequentially from the identified forums. The authors read through posts in the Excel sheet, highlighting statements that were the main ideas of the post, to discern both broad categories of topics and more specific topics. We coded content pertinent to classic autism myths and analyzed attitudes towards myths such as ‘lack emotion’ and ‘cannot form relationships.’ To document whether forum posts discuss topics that are not widely known outside of elite experts, we compared discussion content to new material about autism contained in the March 2022 DSM 5 Text revision.
Results
Classic autism myths were discussed with examples of when elements of myths may be valid. Posters described cases where parents or therapists believed myths. Experts may believe autism myths due to rapid changes in diagnostic practices and due to their lack of knowledge regarding the characteristics of autistic people who have typical intellectual abilities. We conclude that forums contain high-value information for clinicians because all concepts in the DSM 5 text revision were discussed by posters in the years before the text revision appeared. Ideas that are only slowly becoming part of the research literature are discussed at length in forums. Reading and analyzing forums is useful for both clinicians and scientists. In addition, the relative ease of forum analysis lowers the bar for entry into the research process.
... Females with ASD may present differently to males, with studies suggesting females show fewer social difficulties and repetitive behaviours and have higher levels of social motivation compared to autistic males (Head et al., 2014;Hiller et al., 2016;Lai et al., 2015;Lai & Szatmari, 2020). Furthermore, females are more likely to 'mask' what may be considered to be more outwardly visible autistic traits (Gould & Ashton-Smith, 2011;Hull et al., 2020). This is thought to be due to females being more greatly influenced by social expectations compared to males, across many cultures (Hull et al., 2020). ...
Autistic females often present differently to autistic males, which can lead to difficulties obtaining a diagnosis and subsequent support. Parenting an autistic daughter has been linked to additional parenting stress compared to parenting an autistic son. However, research in this area is limited. A systematic review was undertaken to synthesise qualitative studies on parental experiences of raising autistic females. Nine studies met the inclusion criteria and thematic synthesis was completed. Six themes were created. The analysis found issues with diagnosis and differences in lived experience compared to autistic males can present significant challenges. Parents can struggle with a range of negative emotions or feel overwhelmed. However, studies also found benefits to parenting an autistic daughter, such as increased confidence in parenting.
... 3 Recent estimates suggest that three times as many males are autistic as females, 4 though this may reflect a bias in diagnostic criteria/assessment towards male presentations. 5 It is often stated that around 50% of autistic people have an intellectual disability (for example, in Maslen et al). 6 However, the true prevalence of moderate or severe intellectual disability in people who meet diagnostic criteria for autism is closer to one in ten. ...
... This could indicate that female autistic speakers do not exhibit atypical emotional prosody or that they make an effort to imitate NT behavior. There is a growing body of evidence suggesting that autistic individuals, particularly females, engage in compensatory behaviors and attempt to conceal their ASD symptoms in order to fit in with NT individuals [17,[38][39][40]. This camouflaging behavior is thought to contribute to the later diagnosis or even misdiagnosis of autistic females [41][42][43][44][45]. ...
We conducted an investigation to explore how neurotypical (NT) listeners perceive the emotional tone of voice in sentences spoken by individuals with high-functioning autism spectrum disorders (ASD) and NT speakers. The investigation included both male and female speakers from both groups. In Study 1, NT listeners were asked to identify the emotional prosody (anger, fear, happiness, surprise or neutral) conveyed by the speakers. Results revealed that emotional expressions produced by male ASD speakers were generally less accurately recognized compared to male NT speakers. In contrast, emotions expressed by female ASD speakers were more accurately categorized compared to female NT speakers, except when expressing fear. This suggests that female ASD speakers may not express emotional prosody in the same way as their male counterparts. In Study 2, a subset of produced materials was rated for valence, voice modulation, and voice control to supplement Study 1 results: Female ASD speakers sounded less negative when expressing fear compared to female NT speakers. Male ASD speakers were perceived as less positive than NT speakers when expressing happiness. Voice modulation also differed between groups, showing a tendency for ASD speakers to follow different display rules for both positive emotions (happiness and surprise) tested. Finally, male ASD speakers were rated to use voice cues less appropriately compared to NT male speakers, an effect less pronounced for female ASD speakers. Together, the results imply that difficulties in social interactions among individuals with high-functioning ASD could be due to non-prototypical voice use of male ASD speakers and emphasize that female individuals do not show the same effects.
... 34 Autistic girls' flyunder-the-radar appearance is partly due to their increased likelihood of camouflaging their autistic characteristics. [44][45][46][47][48][49][50] Girls' use of social imitation to fit in makes it easier to blend into the female social landscape. 38,50 For example, a mixed-methods study found that when elementary children with and without autism socialized at school, autistic girls tended to move in and out of groups, vacillating between being mutually engaged in a group and being alone, while autistic boys tended to wander alone. ...
... Consequently, many adults have been identified as autistic 2 later in life, having slipped through the diagnostic net in childhood (Happé et al. 2016). This is particularly true for people who may not conform to traditional, stereotypical descriptions of autism (e.g., women and girls), and may be particularly vulnerable to missed (or mis-) diagnosis (Bargiela et al. 2016;Gould and Ashton-Smith 2011;Leedham et al. 2019). ...
Background & aims
Exploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded.
Methods
We used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6–8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis.
Results
Experiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be ‘lost in translation’ (e.g., in breakout groups).
Conclusions
The online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs.
Implications
From the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups ‘fit’ together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised.
... Targeted interventions should also be developed and evaluated to address the unique challenges faced by females [16]. This may include providing tailored support and understanding that addresses the specific challenges faced by females, such as social communication difficulties and sensory processing issues [17]. Efforts should also be made to increase awareness and understanding of the unique challenges faced by females and address gender bias in the medical profession [18]. ...
Autism Spectrum Condition (ASC) is a neurodevelopmental disorder that affects individuals of both sexes. However, females with ASC frequently remain undiagnosed or misdiagnosed due to a range of factors, including gender bias in the medical profession, societal expectations, and a lack of knowledge about the unique challenges they face. For instance, the gendered subset of the population often struggles with social interaction and communication, relying more on analytical thinking, which can lead to difficulty in generating acceptable responses and behaviors. At the same time, females are more adept at masking their innate behaviors associated with the condition and hyper-focus on intense, immediate friendships. Compared to males, females with may also present with fewer repetitive and ritualistic behaviors and internalize emotions such as anxiety and depression, thus leading to a higher risk of suicide. Diagnosis inequality with males may be due to overshadowing by co-existing conditions, gender bias, and a lack of understanding of female-associated interests. Strategies for supporting females with the condition include providing concrete and visual information, offering incremental steps to structure transitions, understanding their aversion to change, offering guided choice options, and using social stories and factual evidence to help work through fears. Increasing awareness of the unique challenges faced by females with autism is crucial in improving support and understanding for them. Further research and training for clinicians and supportive resource materials for families and the wider community are necessary to reduce the impact of ASC on females and improve their quality of life.
... Although the terms high-functioning autism (HFA) and Asperger disorder are not formally used, the M:F ratio among children and adolescents without intellectual disabilities (intellectual developmental disorders) ranges from 6:1 [16] to 10:1 [17]. Some studies have emphasized that lower representation of prevalence among females may reflect lower probability of the condition being identified in females altogether [18], or misclassified as having affective, anxiety, personality, or eating disorders [19]. A recent systematic review approached this issue by analyzing 54 studies including 13,784,284 participants, with findings pointing to a M: F ratio closer to 3: 1 [20]. ...
Unlabelled:
AUTISM: spectrum disorders (ASD) often remain undiagnosed until adulthood. The aim of this study is to report differential diagnoses (DDX) and comorbidities of adults without intellectual impairment suspected of having an ASD and to test the self-assessment questionnaire Autism Quotient (AQ) for its suitability for screening.
Methods:
DDX and comorbidities were recorded with standardized scales in an autism outpatient clinic in 106 individuals. The AQ was tested against the expert judgment of an interdisciplinary case conference using ROC analysis.
Results:
Affective disorders were common in both groups (48%); other DDX were phobias (33%) and personality disorders (22%). The AQ showed an AUC of 0,527 with sensitivity/specificity of 70%/35%.
Conclusions:
Adults suspected of having autism are highly burdened by DDX and comorbidities. An interdisciplinary diagnostic procedure based on standardized scales is useful, whereas the AQ hardly differentiates between persons with and without ASD.
... 34 Autistic girls' flyunder-the-radar appearance is partly due to their increased likelihood of camouflaging their autistic characteristics. [44][45][46][47][48][49][50] Girls' use of social imitation to fit in makes it easier to blend into the female social landscape. 38,50 For example, a mixed-methods study found that when elementary children with and without autism socialized at school, autistic girls tended to move in and out of groups, vacillating between being mutually engaged in a group and being alone, while autistic boys tended to wander alone. ...
Objectives:
This study examines the relationship between social engagement and loneliness in female and male autistic children and adolescents in school-based social settings. Secondary aims sought to explore the emergence of loneliness across different age groups and differences in social engagement and loneliness between genders.
Methods:
This study conducted an analysis of previously collected data from two multi-site randomized control trials. This study included 58 autistic students (29 females, 29 males) between the ages 6 through 18 years. Female and male participants were matched on age and intelligence quotient. Concurrent mixed methods were used to examine participants' social engagement and loneliness.
Results:
Findings revealed a significant relationship between joint engagement and loneliness, such that autistic students reported more loneliness when they were mutually engaged with social groups than when they were isolated or alone. Positive correlations between joint engage and loneliness were identified in elementary-age girls and secondary-age boys, suggesting that being mutually engaged with peers leads to increased loneliness. Negative correlations between parallel and loneliness identified in secondary-age boys suggested that boys in close proximity to peers felt less lonely than boys who were mutually engaged with peers. Qualitative analysis of social behaviors indicated that elementary girls and secondary boys were more likely to be mutually engaged or in close proximity to activities, but they had difficulty sustaining this engagement throughout the entire social period. Secondary girls and elementary boys, on the other hand, were more likely to be solitary and less likely to engage with peer groups.
Conclusion:
Study findings highlight the relationship between social engagement and loneliness in school-based autistic populations, and that more engagement itself can lead to more loneliness for younger girls and older boys. The influence of age and gender on engagement and loneliness highlights a need to tailor social interventions to leverage existing social strengths.
... Finally, camou aging may result in missed or late diagnosis, as well as a lack of supports and services (Gould & Ashton-Smith, 2011; Kirkovski et al., 2013;Lai et al., 2015). Camou aging may lead to a false perception that an individual is doing well, while they may be experiencing signi cant di culties internally (Harmens et al., 2022;Hull et al., 2017). ...
Purpose
Camouflaging, or the use of strategies by autistic people to minimize the visibility of their autistic traits in social situations, is associated with stress, autistic burnout, depression, and suicidality among autistic adults. However, little is known about how autistic children and adolescents experience camouflaging, limiting our understanding of its onset and development. The present study filled this knowledge gap by examining camouflaging behaviour among autistic children and adolescents using a photo-elicitation approach.
Methods
Eight autistic children and adolescents aged 10 to 14 years (M = 11.88, SD = 1.89) attended an orientation session and were given two to three weeks to take photographs on the topic of camouflaging. Individual interviews were conducted with each participant about their photos. Inductive thematic analysis and an interpretive engagement framework were used to identify major themes within participant interviews and images.
Results
Qualitative analysis identified 12 themes reflecting motivations to camouflage (as a response to negative social experiences, as a learned habit), contexts of camouflaging (e.g., the audience), strategies and behaviours used to camouflage (suppressing autistic stimming behaviour, hiding the self), and perceived consequences of camouflaging (internal conflict, stress, needing time to recharge).
Conclusion
Results highlight that autistic children and adolescents as young as 10 years old engage in camouflaging behaviour which can be pervasive and automatic, and that this can be a stressful, confusing, and energetically draining experience. Better understanding of the development and experience of camouflaging in childhood can inform prevention of mental health concerns in adulthood.
... Both ADHD and ASD with normal intellectual ability are diagnosed later in girls than boys and often coexisting behavioral/emotional problems are needed for a diagnosis (Dworzynski et al., 2012;Frazier et al., 2014;Young et al., 2020). Camouflaging behavior has recently been reported among females with both ADHD and ASD leading to an underestimation of their problems (Gould & Ashton-Smith, 2011;Young et al, 2020). ...
Objective
Investigate diagnostic stability, daily life functioning and social situation in women diagnosed with ADHD and/or ASD in childhood.
Methods
Prospective 17 to 20-year follow-up study of 100 girls of whom 92 diagnosed in childhood with main DSM-IV ADHD or ASD, and 60 comparison girls. Ninety and 54 of these women were examined (M = 27, 4 years old) with semi-structured interviews and questionnaires, close relatives were interviewed.
Results
At follow-up, 89% of women with ADHD or ASD in childhood still met the criteria for either of these diagnoses. Very few women were “in remission.” In 34% the main diagnosis shifted from ADHD to ASD. Women with ADHD and ASD had significantly more disability and unfavorable social situation than comparison women.
Conclusion
Women with ADHD and/or ASD in childhood had impairing problems 17 to 20 years later. Early ADHD changed to ASD in adulthood in some cases. Nearly all with ASD met criteria for ADHD as adults.
... Thus, these people will more likely make considerable efforts to adjust their behavior to conventional rules of non-autistic individuals, and subsequently suffer from concurrent psychiatric symptoms due to the long-term stress associated with the continuous attempt to adapt in day-to-day life [27,28,34]. In this framework, the term "social camouflaging" by ASD people is used to indicate a coping strategy for masking difficulties in social situations, and has gained increasing attention in clinical and research settings [35][36][37][38][39][40][41][42][43]. Social camouflaging strategies may include hiding some types of behaviors that might be considered socially unacceptable, or explicitly performing another behavior considered to be more neurotypical in order to appear socially competent [36,43]. ...
In the recent years, growing attention has been paid to the use of camouflaging strategies by adult populations suffering from autism spectrum disorder (ASD) with milder manifestations and without intellectual impairment, which may lead to a delay in diagnosis or even a misdiagnosis. In fact, high-functioning ASD individuals were reported to be more aware of their communication difficulties and were more likely make considerable efforts to adjust their behavior to conventional rules of non-autistic individuals, learning to imitate other non-ASD individuals. Moreover, females reported a higher frequency of camouflaging strategies, suggesting a role of camouflaging in the gender gap of the ASD diagnosis. Although camouflaging strategies can sometimes grant a better level of adjustment, even resulting in a hyper-adaptive behavior, they are also often correlated with negative mental health consequences due to the long-term stress associated with continuous attempts to adapt in day-to-day life. In this framework, the aim of the present work was to review the available studies that assessed the presence and correlates of camouflaging strategies in individuals with ASD. Although the literature available on the topic is still scarce, some interesting correlations between camouflaging and anxious and depressive symptoms, as well as suicidality, were highlighted. In particular, the controversial and sometime opposite thoughts and results about camouflaging may be clarified and integrated in light of a dimensional approach to psychopathology.
... Third, females tend to be undiagnosed until later in life (Begeer et al., 2013;Gould, 2017;Siklos & Kerns, 2007). This could be due to several reasons including the understanding of autism deriving from male samples (Gould & Ashton-Smith, 2011;Kreiser & White, 2014;Mandy et al., 2012), the presence of co-occurring mental health conditions in autistic females (Mandy et al., 2012), and the greater tendency for autistic females to camouflage (Cook et al., 2021). ...
Loneliness is a universal feeling that people might feel when there is a gap between the ideal and actual states of their social relationships. Historically, it has been thought that autistic people do not have a desire for social connection and instead show a preference for aloneness. However, recent research, coupled with first-hand accounts of autistic individuals, has shown that not only do autistic people experience loneliness, but they may be particularly vulnerable to it (e.g., due to the challenges they experience in social environments and/or due to a lack of supportive environments in which to cultivate social relationships). To date, there has been limited research on loneliness in autistic adults. In this thesis, I used both quantitative and qualitative methods to further our current understanding of loneliness in autistic adults, with a focus on examining the measures used to assess loneliness in autistic adults, as well as autistic people’s lived experiences of loneliness. In Chapter One, I introduce my motivation for this research as a neurodivergent individual and provide an overview of research into both autism and loneliness. In Chapter Two, I use a systematic review to synthesise the current evidence base on loneliness in autistic adults, and to identify gaps in research that can guide subsequent work. In Chapter Three, I use mixed-methods to examine if, and how accurately, existing measures of loneliness capture the experiences of autistic adults. In Chapter Four, I use qualitative methods to explore the unique experience of loneliness in autistic adults. In Chapter Five, I use mixed- methods to investigate experiences of loneliness in autistic adults before, and during the early stages of, the COVID-19 pandemic. In Chapter Six, I discuss the contributions of my research to knowledge on autistic adults’ experiences of loneliness, outline future directions for such work, highlight the strengths and limitations of my research, and present my personal reflections.
... In particular, girls with autism were more likely to be overlooked, as they did not fit autism stereotypes, and their symptoms were often misunderstood as something else (Gould & Ashton-Smith, 2011), such as introversion. In those cases, a caregiver with experience in caring for a girl with autism tended to play a "consultant" role in the community. ...
This study aimed to explore the caregiving experiences of primary caregivers, mothers of children with high-functioning autism, during the transition of leaving school and sometimes starting work. In-depth interviews were conducted with nine caregiving mothers with high-functioning children with autism aged 16–27 years. Results revealed that caring for a high-functioning child with autism during their life transition includes three roles: social advocacy, caregiving life coach, and personal selfhood reexamination. Thus, a theoretical model of empowering these caregivers during the child’s school-to-work life transition can be established. With the empowerment strategies of strengthening multiple roles, findings allow practitioners and policymakers to reflect on the interventions supporting families in transitioning planning at different systematic levels, including the individual, the family, and the larger community.
This study seeks to explore the impact of ABA (Applied Behavior Analysis) therapy on enhancing communication skills in children with autism. An experimental design involving pre-test and post-test assessments was utilized to measure changes in communication abilities before and after the ABA therapy intervention. Analysis with the Wilcoxon Signed Ranks Test revealed a notable improvement in communication skills among children with autism following the ABA therapy. Descriptive findings indicated that the average communication score at the pre-test was 27.75, while the post-test mean rose to 40.38, demonstrating a gain of 12.63 points. The Wilcoxon test produced a p-value of 0.012, which is below the typical significance threshold of 0.05, meaning the null hypothesis (H₀), which suggests no difference between pre-test and post-test, can be rejected. Thus, it can be concluded that ABA therapy has a significant positive impact on improving communication abilities in children with autism. Despite these encouraging results, the study's sample size is a limitation, and further research with larger samples and extended follow-up periods is required to deepen our understanding of ABA therapy's long-term effects.
Young adulthood presents many developmental tasks. For autistic individuals and those with many autistic traits, this transition to adulthood can be challenging. Typically, family and professional support become less available. Nevertheless, most scientific research on these individuals has focused on childhood and adolescence. A scoping review was conducted to summarize peer-reviewed research on these young adults and the problems they encounter; 510 studies focused on autism and 92 on autistic traits. This review reveals that understudied subpopulations include young adults with intellectual disabilities, women and gender minorities, and non-Western populations. Furthermore, although not all individuals face difficulties, young adults with many autism characteristics (with or without autism diagnosis) experience diverse challenges. Most studies highlighted social difficulties, emotional problems, and cognitive differences. Recommendations include conducting more qualitative research and studies that address multiple topics simultaneously, paying attention to infrequently studied areas (e.g., sleep problems, gender, and sexuality).
For decades, autism was thought to be predominantly associated with being male, more than female (Asperger, 1943; Duvekot et al., 2017; Wing, 1981a, 1981b). However, our awareness of autism and its impact upon gender is changing. Not only do we recognize women and other genders (non-binary, trans) are just as likely to be Autistic as men, but we also understand that autism, which is a spectrum, impacts the gender spectrum in various ways too (Boorse et al., 2019).
Available tools for diagnosing autism are not sensitive to gender differences and their construction is based on a male-centered conceptualization of autism, which in practice boils down to finding male traits in the behavior of people with autism. This diagnostic tendency resulted in more frequent recognition of autism in men. Recent studies indicate that the likelihood of autism among girls and women is higher than previously assumed. This article is a review of the literature describing the specifics of female autism, focusing on those features of their functioning that significantly differentiate between female and male autism. The text emphasizes the importance of diagnosis for better functioning of women and improvement of their quality of life.
Whether autism spectrum disorder (ASD) is effectively less represented in females or it is underestimated in this sex/gender remains an open question and objective of a growing body of research.
Understanding how and when autism symptoms arise within sexes/genders definitely contributes to the definition of a female autistic phenotype with essential implications.
Within this chapter, we summarize the main available knowledge on the topic ranging from the current prevalence to the possible nosological and clinical reason for this data including the role of intellectual quotient and adaptive skills together with the employment of male-biased instruments.
Neste ensaio, busquei observar quais são os recursos mobilizados na linguagem para compartilhar a experiência do autismo sob uma ótica feminina no livro A Orquestra dos Inocentes Condenados (2021), da poeta Milena Martins Moura. Para tanto, mostrou-se necessário o diálogo com autores que abordassem temas como a literatura de testemunho, a poética autista e a noção de contemporâneo na literatura. Dessa forma, pode-se observar o olhar crítico da escritora em relação à falta de acessibilidade e de preparo médico na sociedade. Além disso, identifiquei a noção de apagamento e camuflagem social como centrais às reflexões que a obra evoca. Com isso, percebi como as escolhas na composição dos poemas pela escritora podem evidenciar vivências recorrentes em mulheres autistas que não parecem tão comuns nos relatos das pessoas em geral e nem mesmo na representação do autismo por personagens masculinos.
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder which has been found to present differently in males and females. For example, autistic females more commonly tend to hide their autistic traits, or 'camouflage'. Original theories of autism such as the 'extreme male brain' theory have a male bias in diagnosing the condition, creating a significant underdiagnosis of females on the spectrum. Little research has been conducted into whether the assessment questionnaires may be partially to blame for this, as they may not identify these differences in traits between genders. The current study examined this by having autistic (self and professionally diagnosed) and non-autistic adult women complete three questionnaires: the Autism Quotient (AQ50); Girls Questionnaire of Autism Spectrum Conditions (GQ-ASC); and Camouflaging Autistic Traits Questionnaire (CAT-Q). Participants were also asked to rate each questionnaire on its relevance, meaningfulness, and clarity and an optional comments box was provided. It was hypothesised that (1) autistic participants will score higher in all questionnaires than non-autistic participants and (2) the GQ-ASC will be more sensitive in identifying autistic women than the AQ50. The findings show that both hypotheses were supported. Evaluative comments suggest that participants preferred the GQ-ASC despite some questions not feeling age appropriate, the CAT-Q felt repetitive, and the AQ50 felt stereotyped and male-biased. Development of future questionnaires should focus closely on the age demographic and research proven traits of ASD, ensuring they are not repetitive. Further suggestions for research are discussed.
Variants of the SCN2A gene, encoding the Na V 1.2 sodium channel, cause a spectrum of neurodevelopmental and epileptic disorders, and are among those that show the strongest association with Autism Spectrum Disorder (ASD). ASD has a male-bias prevalence, but several studies have proposed that female prevalence may be underestimated due to different symptomatic expression compared with males. However, it is unclear whether this is related to actual different pathological features or to greater masking abilities in females.
Studies on Scn2a +/− mice, a model of SCN2A haploinsufficiency and ASD, have shown an age-dependent ASD-like phenotype attenuated at adulthood in males. However, little is known about the behavioral features of Scn2a +/− female mice. We performed a battery of behavioral tests that are relevant for assessing ASD-like features, investigating juvenile and adult Scn2a +/− female mice.
Our results demonstrate that female Scn2a +/− mice exhibit an overall milder phenotype than males, showing increased sociability and increased risk taking in juveniles, hyper-reactivity to cold stimuli in adults, altered decision-making related behaviors in both. Thus, this is consistent with the male-bias prevalence of ASD and the existence of different ASD phenotypic features in males and females. Both genders should be investigated in studies of mouse models of ASD.
In recent years, classifiers have been shown to provide highly accurate results in predicting problems; however, the success relies on the classifier as well as the employed dataset. In this study, the success of various classifiers for predicting autism spectrum disorder cases is analysed in terms of different metrics obtained both after testing on the same set and after applying 10-fold cross validation. When the same dataset has been used for the training and testing steps, all the algorithms have shown excellent results. Nevertheless, when 10-fold cross-validation has been applied, sequential minimal optimization has become the most successful classifier in terms of all the performance metrics. Although the results have proven the success of classifiers in predicting problems such as the one addressed in this study, autism spectrum disorder is a complex disorder, and the tools employing classifiers should be used under the supervision of certified professionals or clinicians.
The purpose of this work is to accomplish earlier identification of females and those with more nuanced autistic traits. This chapter lays the groundwork for early identification with comprehensive evaluation for young children, with more details in subsequent chapters for school-age children, adolescents, and adults. Barriers to identification, performance of screeners and measures in female children, first-person accounts, and a discussion of comprehensive evaluations are included. Implementation information (e.g., screeners and measures) are given as a guide to building a comprehensive evaluation battery for the assessment of females and other nuanced cases. Finally, directions for support needs are included.KeywordsAutismFemaleNuancedAssessmentComprehensive evaluationScreeningSurveillanceIdentificationAdaptive
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