Lara S Schaeffer1*
1M Ed, Harvard University, Autistic Independent Researcher, Certified Autism Specialist, Autism Consultant, 350 Springfield Avenue, Suite 200, Summit, New Jersey, USA.
*Corresponding Author: Lara S Schaeffer, M Ed, Harvard University, Autistic Independent Researcher, Certified Autism Specialist, Autism Consultant, 350 Springfield Avenue, Suite 200, Summit, New Jersey, USA.
|ReceivedFeb 16, 2023||RevisedFeb 23, 2023||AcceptedFeb 27, 2023||PublishedMar 13, 2023|
Autism is a complex condition which affects different individuals in markedly different ways. The autism spectrum is often referred to for exactly this reason, accounting for great variation in many distinct categories of symptoms of autistic people. Understanding of this broad range in how autism can present in different individuals needs to increase because, otherwise, many individuals are at risk of remaining undiagnosed. When autism is overlooked and goes undiagnosed in females, biological inevitabilities of menses and menopause, along with the possibility of pregnancy, stand to bring greater disruption to the undiagnosed individual than to the general population of females. As such, the underdiagnosis of autism in females urgently needs attention.
Autism; Autism diagnosis
It is known that historically males have been diagnosed as autistic more frequently than females. While research studies are slowly beginning to include more female participants, past autism research was conducted primarily on white male autistics. What has resulted is a perpetuation of expectations and prejudices regarding how autism presents in individuals, judgments that are based on typical male presentations.
Over the decades since autism was first recognized, females have been far less likely to be diagnosed as autistic than males. This discrepancy has remained ever since autism diagnosis rates began to steadily rise at the turn of the 21st century. Because current evaluation models rely heavily on typical male autistic presentation, females are less likely than males to be diagnosed as autistic.
As an additional important factor impacting autism diagnoses, psychologists are increasingly recognizing the role of masking, a process which allows many autistic individuals to compensate for their differences and to appear and behave more like the general population. Through masking, many autistics compensate for and cover their autistic symptoms in order to avoid the societal judgment which they face when they act according to their natural tendencies.
Differing societal expectations for males and females can mean that autistic females are more likely to depend on masking in everyday interactions than their male counterparts, as well as to be more likely to internalize their autistic symptoms. The less people exhibit signs of autism, the less likely they will be to be referred for evaluation at all, a reality which compounds the underdiagnosis of autism in females. While masking impedes the diagnosis of autism in both genders, females may be more willing or more able to control their autistic symptoms and to internalize them. Thus, despite the presence of internalized autism symptoms, females are going undiagnosed.
Underdiagnosis of autism in females is of special concern because of the basic biological and physiological make-up of females. Menstruation, possible pregnancies, and inevitable premenopause and menopause each lead to wide hormonal fluctuations that hold formidable sway over the female experience. Throughout a female’s lifetime, fluctuations in levels of serotonin, endorphins, dopamine and estrogen impact brain chemistry and, due to inherent differences in autistic brains, are likely to affect autistics differently than non-autistics. Yet, as Jan Schlaier and Jacqueline Berko note, “The topic of hormonal influences on women with autism has received scant attention from health care workers” .
Hormonal influences are likely to lead to differing experiences for females who are autistic when compared to the general population. On a basic level, the increased sensory sensitivity of autistics may lead autistics to be “more likely to be negatively affected by menses-related symptoms” . In terms of pregnancy, one study reported that 60% of autistic mothers experienced post-partum/post-natal depression, as compared to only 12% in the general population . According to professor Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge in England, the “worryingly high number of autistic mothers who experience post-natal depression means we are failing them and their infants at a critical point in their lives” . Combine this knowledge with the assumption that a portion of autistic females are currently undiagnosed, living with the complications and challenges autism brings yet without realizing what is at their root, and the scope of the problem is easy to see.
Inevitable changes for females later in life may bring impacts to autistics that are different from or greater to that of the general population as well. As Rachel Mosley, et al. notes, “nothing is known about how autistic women handle the menopausal transition in midlife” . Despite the work being published in 2020, the researchers were, alarmingly, able to assert that at the time “not one single study” existed on menopause in autistics, thankfully, the work rectified this gap.
As a fascinating result of the research, the work supports “the idea that autistic women could be able to mask the autistic characteristics until reaching menopause” . Clearly the influence of hormonal variation on autistic women needs more attention.
The natural hormonally-driven biological processes in females increase the potential for mental health complications in females with autism. Thus, it is critical to increase the understanding of how autism presents in females. Until autism is more widely and readily identified and diagnosed in females, adult females will continue to experience symptoms of autism with no explanation or supports, while also navigating great fluctuations in hormones which together can greatly influence their outlook and mental health.
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5. Moseley RL, Druce T, Turner-Cobb JM. ‘When My Autism Broke’: A Qualitative Study Spotlighting Autistic Voices on Menopause. Autism. 2020;24(6):1423-37. PubMed | CrossRef
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