Autism spectrum disorder is thought to be a predominantly male diagnosis, however recent research suggests a smaller gender disparity in prevalence than previously assumed. Accounts of the female experience of autism are important to help reduce likely male-bias in current understanding and recognition of autism. Eighteen autistic females and four mothers of autistic females took part in discussions with a topic guide around diagnosis, impact and coping. A thematic analysis was conducted. Five themes were identified: fitting in the with the norm, potential obstacles for autistic women and girls, negative aspects of autism, the perspective of others, and positive aspects of having autism. We hope that greater understanding of the experiences of autistic females may lead to improved awareness, diagnosis and support for women and girls. Electronic supplementary material The online version of this article (10.1007/s10803-019-03906-4) contains supplementary material, which is available to authorized users.
There is increased recognition that women and girls with autism spectrum disorders (ASD) are underserved by the clinical criteria and processes required to receive a diagnosis. This mixed-methods systematic review aimed to identify key barriers to obtaining an ASD diagnosis in girls and young women under 21 years. Six themes were identified that focused on perceived gendered symptoms, namely behavioural problems, social and communication abilities, language, relationships, additional diagnoses/difficulties and restricted and repetitive behaviours and interests. Five themes were identified as (parental) perceived barriers to diagnosis, namely compensatory behaviours, parental concerns, others’ perceptions, lack of information/resources and clinician bias. This review highlights the importance of enhancing widespread understanding and recognition of ASD presentation in females across development. PROSPERO Centre for Reviews and Dissemination (ID 2018 CRD42018087235)
Background: There is growing recognition that some autistic people engage in 'compensation', showing few behavioural symptoms (e.g. neurotypical social skills), despite continuing to experience autism-related cognitive difficulties (e.g. difficulties in social cognition). One way this might be achieved is by individuals consciously employing 'compensatory strategies' during everyday social interaction. However, very little is currently known about the broad range of these strategies, their mechanisms and consequences for clinical presentation and diagnosis. Methods:We aimed to measure compensatory strategies in autism for the first time. Using a novel checklist, we quantified self-reported social compensatory strategies in 117 adults (58 with autism, 59 without autism) and explored the relationships between compensation scores and autism diagnostic status, autistic traits, education level, sex and age at diagnosis.Results: Higher compensation scores-representing a greater repertoire of compensatory strategies-were associated with having an autism diagnosis, more autistic traits and a higher education level. The link between autism diagnostic status and compensation scores was, however, explained by autistic traits and education level. Compensation scores were unrelated to sex or age at diagnosis. Limitations: Our sample was self-selected and predominantly comprised of intellectually able females; therefore, our findings may not generalise to the wider autistic population.Conclusions: Together, our findings suggest that many intellectually able adults, with and without a clinical diagnosis of autism, report using compensatory strategies to modify their social behaviour. We discuss the clinical utility of measuring self-reported compensation (e.g., using our checklist), with important implications for the accurate diagnosis and management of autism and related conditions.
Many autistic individuals camouflage socially atypical behaviours. Evidence suggests autistic females camouflage more than autistic males. Although camouflaging may confer some benefits, it is also associated with negative outcomes including poorer mental health and well-being. Those with high autistic traits but no clinical diagnosis are not seldom included in camouflaging research, therefore we cannot ascertain whether camouflaging plays a role in the underdiagnosis of autistic females. Data from young adults with a diagnosis of autism ( n = 78), high autistic traits but no diagnosis ( n = 177) or low autistic traits ( n = 180) revealed autistic females reported camouflaging significantly more than other groups. Males and females with low autistic traits reported significantly lower camouflaging than high trait and diagnosed groups. Loneliness was a key predictor of camouflaging for the diagnosed group only. Camouflaging was found to predict lower psychological quality of life for the diagnosed group, and lower social quality of life for the high trait and low trait groups. Overall, findings indicated that, although all groups reported camouflaging, the motivations for doing so may be different for diagnosed autistic individuals. It is important for stakeholders and society to improve understanding of autism and acceptance of atypical behaviour to alleviate possible negative outcomes associated with camouflaging. Lay Abstract Many autistic people use strategies that help them adapt in social situations and hide behaviours that may seem different to non-autistic individuals – this is called camouflaging. Camouflaging may help autistic people fit in socially; however, it might also lead to poorer well-being. It has been suggested that autistic females camouflage more than autistic males. This article explored differences between males and females who have an autism diagnosis, have characteristics of autism but no diagnosis and those with few autistic characteristics. It is important to include these groups as camouflaging may make it more difficult to get an autism diagnosis and therefore make it less likely a person will receive support. We found that autistic women camouflaged more than all other groups. The group with few autistic characteristics (males and females) camouflaged the least. Loneliness was found to be a possible reason for camouflaging for the diagnosed autistic group only. In terms of outcomes related to camouflaging, it was found that those who camouflaged most had a lower quality of life; this was true of all groups. This tells us that there may be different reasons to camouflage, and different outcomes related to camouflaging for those with many characteristics of autism (including those with a diagnosis), and those with few. It is important that clinicians, teachers, parents and other stakeholders are aware of the negative outcomes associated with camouflaging so that more support can be provided for those who need it.
Camouflaging describes masking or compensating for autistic traits and/or related difficulties. Some evidence suggests autistic females camouflage more than autistic males, potentially contributing to delayed or missed diagnosis. Studies predominantly adopt self-report measures of camouflaging, potentially reflecting a person's intent to camouflage without accurately measuring effectiveness (i.e., success in fulfilling the intended effect of minimizing the appearance of autistic traits) of camouflaging. Discrepancy scores between underlying cognitive difficulties (e.g., theory of mind) and observed autistic traits (henceforth camo ToM ), or between self-reported autistic traits and observed autistic traits (henceforth camo SRS ), may provide a more accurate measure of camouflaging effectiveness. Three measures of camouflaging administered to autistic males (n = 46) and females (n = 40), and adults with equally high levels of autistic traits but no diagnosis (n = 45 males, n = 43 females) recruited from a large population-based sample were compared. Self-report measures of camouflaging were significantly correlated with camo SRS scores only. Both discrepancy scores were correlated with each other. Adults with high autistic traits, but no diagnosis, had higher discrepancy camouflaging scores than diagnosed adults, but self-reported scores were similar. Diagnosed females scored higher than diagnosed males across all camouflaging measures, but no sex difference occurred in the high trait group. This might indicate that autistic females have higher intentions and greater effectiveness when camouflaging, compared with autistic males. For camo SRS only, high trait males scored significantly higher than diagnosed males; no group difference occurred for females. These results suggest that, despite all participants intending to camouflage to some extent, effective camouflaging as measured by discrepancy scores is higher in undiagnosed high autistic trait individuals. One interpretation is that effective camouflaging reduces the likelihood of autism diagnosis in males and females with high autistic traits.
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