Introduction
“Compared to males, females are at substantially elevated risk of their ASC going undiagnosed: their difficulties are frequently mislabelled or missed entirely”
This research paper was released by Sarah Bargiela, Robyn Steward and William Mandy. All of them are doing researches for the University College of London but while Bargiela and Mandy are also clinical psychologists, Steward is an Honorary Research Associate who is herself autistic. Both her and Bargiela work directly to improve the care of autistic people.
Their article was published on Journal of Autism and Developmental Disorder and dates back to 2016.This study deals with the complexity and lack of knowledge about female form of autism. Based on the experience of women diagnosed during late adolescence or adulthood, it provides several possible guidelines for researchers to keep developing the knowledge of autistic traits in girls and women.
Summary
After reminding the definition and actual criteria for autism, the authors develop a theoretical part in which they underline some issues regarding diagnosis in girls and women, leading to underestimating the real proportion of autistic females. One of these issues would have to do with the female capacity to ‘camouflage’. Few studies have investigated this concept which is specifically explored throughout young women’s account. The findings should make an important contribution to the field of diagnosis as, according to the authors, measures would need to consider other characteristics in order to improve detecting autistic women.
During the study, the participants answered several quantitative questionnaires and also exchanged about their experience regarding autism during an interview. The researchers worked on their answers according to broad themes standing out within several accounts.
A common view amongst the interviewee was about difficulties to be recognized as an autistic person by other people and especially professionals such as doctors and teachers. Most of participants were misunderstood as being shy and reserved. These characteristics were easily accepted by adults surrounding them, for example during classes. And in the worst case, they could appear rude or not making enough efforts to fit in, but people rarely interpreted their behaviors as signs of autism.
However, this is precisely where external observers are mistaken: all these women spent much time and energy in making efforts to look not too different from their peers, starting from childhood. They describe several strategies, such as wearing a ‘mask’ that would make them seem ‘normal’. For example, they relied mostly on what they had read in novels or seen in movies about social situations, without understanding it could be far from real life. Some of them would also copy other people’s behaviors, nonverbal communication and ways of speaking in different contexts. In a nutshell, because they couldn’t understand how social relationships were working, they learned by observing and mimicking what others would do in which situation.
Nonetheless, this learning process had its limits. Firstly, the amount of energy needed was exhausting for the girls who couldn’t stand more back home: they often had ‘meltdowns’ which made them behave the opposite of the quiet girls they were at school. And mostly, through functioning by mimicry, most women explain having struggled a long time in finding their own identity. For instance, some of them tried hard to fit with stereotypical expectations about female gender while not matching with them in the end. They also describe how hard it had been for them to develop relationships, which could sometimes lead them to make things against their will in order to please other people. And actually, concerns were expressed about different abuses experienced by many woman, including sexual ones … Several women explain that they were lacking of ways to express their disagreement, rather than knowing they had the right to say ‘no’. Yet some others got able to learn about what was not acceptable for them and how to act in such cases, but also after several abuses.
Overall, women underline the stakes about learning to respect their particular needs rather than shutting them. They all agree to say that their diagnosis played an important part in this process, allowing them for example to make real friends, to rest on their own when they need to and above all to genuinely define themselves.
Critical evaluation
Several limits are discussed at the end of the article. The general idea for this study was to provide leads about what should be more explored about female phenotype of autism. These domains encompass social skills, internalizing difficulties but also differences regarding age, intellectual efficiency and culture. Such lacks are not surprising as the subject is new. Thus, this article can easily be considered as a working base regarding particularities in adult women with autism. Improvements in this subject are indeed necessary as autism remains a vast subject still to explore, especially in its less severe forms. Thereby, such accounts show that seeing a woman keeping quiet and internalizing her difficulties isn’t saying much of her inner functioning.
Conclusion
Although I found this article enlightening, I feel that several characteristics could’ve been explored. For instance, the study would have been more useful if the authors had explored what led these women to get diagnosed. And even if the authors chose mostly to explore new ideas, I would have wanted to read more about some important criteria related to diagnosis, that is to say specific interests, sensitivity and stimming (self-stimulation). In addition, the study would have been more interesting if it had dealt with meltdowns and shutdowns deeper. Indeed the general feeling after reading this work could be the lack of similarities with male phenotype of autism and, maybe as a consequence, readers wondering whether these traits are really autistic ones.
But in the end, I find this article positive, as it opens doors to keep exploring this subject in order to upgrade our knowledge about how varied the autism spectrum can be. I would say it is a necessity as we probably won’t adopt the same strategies for the care of atypical women, even if some of their symptoms such as depression or anxiety would look typical at first glance.
Words we have learned:
Widespread: étendu, répandu
Ascertainment: détermination, vérification
Gold-standard measure: mesure de référence
Yield: produire, rapporter
Subsequently: ensuite
Mimicry: imitation
Threshold: seuil
Reference:
Bargiela, S., Steward, R. & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developemental Disorder, 46, 3281-3294. https://doi.org/10.1007/s10803-016-2872-8
By Joanna Yeung Lam Ko