Alana M. Carroll
Anchor Contributor
After walking into a behavioral health center at the age of 21, I was struck with a truth I have spent my entire life unaware of: I am autistic. It was easy to believe, the criteria fitting my symptoms like a hand in a glove, but what was not immediately understood was a question that follows me to this day:
Why did it take me so long to find an answer?
I have displayed the same behaviors that eventually led to my diagnosis since childhood. As somebody who received early intervention, I have spent my entire life speaking with psychologists and clinicians. I am no stranger to special education classrooms or social workers; I did not excel in social situations with my peers; my narrow and specific interests dominated any conversation I might have. I was overlooked by every professional who met with me, my autistic traits attributed to any of my other diagnoses. I have been utilizing disability accommodations since grade school, accommodations which I still utilize today in my classes here at RIC.
The conclusion I have reached is that I am a woman with what used to be considered “a disorder for boys.”
Leo Kanner’s 1943 studies, which focused on the disorder in youth, were monumental and contributed immensely to the separation of autism from other documented disorders at the time. These studies however were dominated by boys. There were approximately 4 times as many males as females referenced in his research. Subsequent studies on the disorder focused on the male-dominant symptoms noted in Kanner’s research, including hyperactivity, impulsivity and a lack of social interest. Numerous studies have sought to counteract the male-dominant view many researchers assign to the disorder by researching how symptoms present in autistic women.
The diagnostic criteria according to the DSM-5, of course, does not change between men and women; rather, specific symptoms will often appear different between sexes. For women, self-regulating behavior (also known as “stimming”) may present in ways that are considered socially acceptable, such as twirling hair or skin-picking. Research suggests that women may also hide their symptoms in social situations to fit in with peers more than men, an action known as “masking.” Outbursts from frustration and sensory overload, called “meltdowns,” are a frequent result of this self-containment. Aside from meltdowns, masking can also contribute to heightened levels of anxiety or depression.
It is vital that those with the disorder receive an appropriate diagnosis in order to avoid unnecessary hardship; consequences of undiagnosed ASD include issues with self-esteem, clinical depression, the development of psychiatric disorders, struggles in academic environments, and even increased suicidality. Autism does not only go undiagnosed, but there is also a high rate of misdiagnosis; ASD is commonly mistaken for disorders including personality, eating, depressive and anxiety disorders. I personally have been a victim of misdiagnosis, being told throughout my childhood and teenage years that I had oppositional defiant disorder. As a young adult, my symptoms were also attributed to my already existing diagnoses. In particular, my emotional outbursts and social deficits were explained away as borderline personality disorder. BPD is a common misdiagnosis for autistic women and although I personally struggle with BPD in addition to autism, many autistic women who have been diagnosed with BPD do not have the disorder. Especially concerning is the fact that autistic women who are undiagnosed or misdiagnosed do not receive the necessary treatments or accommodations necessary for living with the disorder.
A diagnosis of ASD qualifies those with the disorder to request accommodations in areas that may be hard to navigate without extra assistance such as a workplace or college campus. Unlike in grade school, however, autistic adults need to be able to request these accommodations from their college or university’s disability office. Accommodations are essential for ensuring equal academic functioning and they can range from increased allotted time during tests and assignments, seating away from distracting or overwhelming stimuli, sensory-friendly dorms, or even assistive technology to aid notetaking. Understanding and utilizing the tools given to me during my college journey have helped me to thrive in classroom settings and reach my full academic potential. After all, my diagnosis does not leave me less intelligent than my peers, I just have different needs.
What can be done to increase the reach of diagnoses in women? There are several solutions. Overcoming personal biases is very important, as many undiagnosed autistics who may be struggling will often not recognize their hardships as related to any disorder. Similarly, increasing awareness of the symptoms, as well as the varying ways they can prevent, will both normalize and destigmatize the disorder as well as reach those whose symptoms present in covert ways. Most importantly, more research must be done on the symptoms that are more common in autistic women. Studying the range of lesser-known signs of the disorder will help autistic women receive an explanation and reach their fullest potential whether they are in or out of school.
Comments