Zeeshan Haider Introduction
Autism spectrum disorder (ASD) is a developmental condition typically identified by the age of 3. Although individuals of any gender may exhibit autistic traits, there is a notable trend for those assigned female at birth to receive an ASD diagnosis later in life, often not until adulthood. This delay in diagnosis is attributed to various factors, including the fact that traditional diagnostic criteria primarily emphasize characteristics observed in autistic boys and men, thus potentially overlooking manifestations in girls and women.
According to data from the Centers for Disease Control and Prevention (CDC) in 2020, the prevalence of ASD in the United States exhibited a significant gender disparity, with a 3.8 times higher prevalence among boys compared to girls, accounting for approximately 4% of 8-year-old boys and 1% of girls.
Autistic women’s delayed diagnosis can also be linked to socialization patterns that encourage masking or concealing autistic traits in girls and women. The American Psychiatric Association’s list of autistic traits may more accurately reflect the experiences of males, contributing to the oversight of autistic characteristics in females.
It’s important to note that individuals assigned female at birth encompass a diverse group, including women, nonbinary individuals, and trans men, all of whom encounter specific challenges in obtaining an autism diagnosis compared to cisgender men. While this discussion primarily addresses the hurdles faced by women and girls, it’s essential to recognize that individuals who identify as nonbinary or gender non-conforming also confront similar difficulties in the process of autism diagnosis.
This article aims to explore the nuanced variations in how autism presents across gender lines and shed light on the specific challenges associated with diagnosing autism in girls, women, and gender non-conforming individuals.
Common Traits of Autism
Autism, being a spectrum, is inclusive of individuals from diverse backgrounds, encompassing all sexes, genders, races, ethnicities, and experiences. The characteristics exhibited by autistic individuals vary widely, including their unique mix of traits, how they perceive and engage with the world, and the level of support they may require.
Research suggests that the expression of autism traits can differ between women and men, contributing to the delay in diagnosing autistic girls. This variation underscores the need for a nuanced understanding of autism beyond a one-size-fits-all approach.
Common indicators of autism involve differences in social and communication patterns, repetitive behaviors, highly focused interests, and sensitivity to sensory stimuli like light, sound, or touch. It’s important to recognize that the criteria for diagnosing autism have evolved over time, with the removal of specific categories such as Asperger syndrome and pervasive developmental disorder not otherwise specified in the DSM-5 in 2013.
Formal diagnosis according to the DSM-5 requires the presence of these traits before the age of 3, even if the diagnosis made later in life. This highlights the importance of considering early developmental indicators in retrospect.
In the realm of language preferences, many individuals diagnosed with autism spectrum disorder lean towards identity-first language. For instance, they may express a preference for “an autistic person” over “a person who has autism.” This choice reflects a broader shift towards recognizing autism as an integral aspect of one’s identity rather than a separate condition.
Communication Differences women and girls with autism
Diagnosing autism often involves recognizing distinctive communication differences, with evidence suggesting that autistic girls and women may excel at observing their peers to grasp neurotypical social norms. This ability allows them to imitate or mask behaviors in an attempt to fit into social contexts.
Speech-related disparities commonly observed in autistic individuals encompass repetitive language use, such as echoing phrases from TV or the internet, consistent use of specific words, and a tendency toward flat prosody, where vocalization lacks tone variations. Difficulties in grasping speech patterns and interpreting body language, especially nuances like humor and sarcasm, are also common. Some individuals may be non-verbal, relying on sign language or augmentative and alternative communication (AAC) devices for communication.
Autistic speech patterns extend beyond language differences to include challenges in social communication. Autistic individuals may struggle to distinguish between platonic and romantic conversations, limiting discussions to favored topics like a preferred TV show. Additionally, difficulties arise in discerning appropriate moments to speak, ask questions, or engage in social groups. In group settings, some autistic individuals may exhibit fast, loud, and frequent speech, further contributing to challenges in social dynamics.
Behavioral Differences women and girls with autism
Identifying autistic behaviors can be challenging, as their visibility depends on factors such as frequency and intensity. Complicating the diagnostic process further, research suggests that autistic girls may exhibit behaviors that are more socially acceptable or adept at concealing these behaviors, making the recognition of autism more difficult, especially compared to boys.
Common autistic behaviors encompass a range of actions, including stimming, which involves movements and sounds used by autistic individuals to self-calm, such as rocking, humming, pacing, or repeating phrases. Some may engage in stimming through tactile sensations or specific auditory stimuli.
Meltdowns represent intense emotional and physical reactions often triggered when autistic individuals feel overwhelmed, panicky, or stressed. During meltdowns, some autistic individuals may display self-injuring behaviors, though it’s important to note that not all individuals with autism exhibit such tendencies. Aggressive actions, like hitting or object-throwing, can also occur during overload situations.
A notable aspect of autistic behavior involves a preference for solitude or a lack of interest in social interactions initiated by others. While many autistic individuals find solace and contentment in solitary activities, even those interested in socializing may encounter challenges in forming and maintaining relationships with neurotypical individuals.
Sensory Differences in women and girls with autism
In 2013, the DSM-5 introduced a paradigm shift in the criteria for autism, incorporating sensory differences into the diagnostic framework. This update recognized that autistic individuals often exhibit heightened sensitivities or particular interests in sensory aspects of their surroundings, such as pain, temperature, sounds, textures, light, and movement.
Sensory sensitivities vary among autistic individuals, with some finding certain sounds overwhelmingly stimulating or even painful, while others seek comfort in specific textures. For instance, an autistic person may struggle to tolerate the sensation of hair on their neck due to overstimulation, yet find solace in repetitively playing with their hair. Auditory experiences, like the sound of a hair dryer, can either overload or calm an autistic person through the generated “white noise.”
Additionally, some autistic individuals grapple with understimulation, experiencing boredom and discomfort that may escalate to a painful level. Activities like dancing, listening to loud music, watching engaging videos, or playing games can serve as remedies for understimulation.
Seeking sensory stimulation and comfort, autistic individuals may turn to food or drink. Some maintain a shortlist of “safe foods,” which, depending on the extent of dietary restrictions, can pose challenges in meeting nutritional needs and caloric intake.
The intersection of autism and eating disorders is notable, with avoidant-restrictive food intake disorder (ARFID) often co-occurring. Despite ARFID not being centered on weight and body image, it can result in weight loss, resembling more widely recognized eating disorders like anorexia nervosa (AN). Notably, autistic girls and women may be misdiagnosed with AN due to their restrictive eating patterns, though autistic individuals can also experience eating disorders beyond ARFID, including AN.
Autism and Self-Care
Many autistic individuals encounter challenges related to motor skills and executive function, impacting their ability to perform self-care tasks. This difficulty in planning actions can make seemingly routine activities, such as daily hygiene tasks, notably challenging.
While some autistic girls and women may not align with or comprehend the societal expectations tied to gender-specific activities like applying makeup or shaving body hair, others may desire to participate but face hurdles due to the intricate planning and motor skills required. Autistic individuals, irrespective of gender, may also find daily tasks like brushing teeth and showering challenging. Sensory sensitivities further complicate these routines, making seemingly simple activities like washing hair in the shower a substantial challenge for some autistic individuals.
For those who menstruate, managing periods can present additional difficulties. The sensory overload associated with aspects like painful cramps, new smells, the sight of blood, and the discomfort of using pads, tampons, or cups can be overwhelming. Moreover, the need to adapt routines, such as changing pads or tampons, avoiding certain activities, or altering dietary preferences, can pose significant challenges for autistic individuals during their menstrual cycles.
These observations underscore the diverse and individualized nature of the struggles faced by autistic individuals in the realm of self-care, emphasizing the importance of recognizing and addressing their unique needs and challenges within the broader context of neurodiversity.
Understanding Autism in Women
The concept of the “extreme male brain (EMB)” theory, attributing autism to a perceived lack of empathy essential to being autistic and the influence of testosterone impairing cognitive empathy, has been debunked. Empirical evidence contradicts these notions, highlighting that autistic individuals, including women and nonbinary individuals, often exhibit empathy but may express it differently from what is traditionally recognized by non-autistic individuals (allistic).
While the number of diagnosed autistic women and nonbinary individuals may differ from males, researchers are exploring the “female protective effect” to understand the underlying factors. Autistic individuals, including women and nonbinary individuals, frequently demonstrate heightened empathy towards people, animals, and even inanimate objects. The challenge lies in recognizing and interpreting their unique expressions of empathy, which may differ from societal norms.
Recent insights reveal an underdiagnosis of autism in individuals who aren’t cisgender men. Factors contributing to this disparity include the tendency for girls to internalize anxiety related to autism, potentially leading to depression or anti-social behavior instead of overt aggression. Societal expectations also play a role, with cultural acceptance of girls being perceived as “shy” compared to boys, for whom shyness is often less acceptable. Additionally, when autistic girls develop intense interests, they may gravitate towards “socially acceptable” fascinations like unicorns or dolls, further complicating diagnosis.
Masking/Camouflaging
Research suggests that autistic girls may be more inclined than boys to engage in camouflaging or masking, where they intentionally or unintentionally hide or cover up their autistic traits. This behavior involves mimicking facial expressions, vocal tones, and other behaviors of their peers, making it challenging for providers and caregivers to readily identify signs of autism. Autistic girls may leverage resources like TV, social media, and observations of others to learn social rules and practice them, including forcing themselves to make eye contact and suppressing autistic behaviors such as hand-flapping.
While girls on the autism spectrum may excel at masking, maintaining this facade requires significant effort, and they often encounter difficulties forming and sustaining peer relationships with non-autistic individuals. Establishing connections with other autistic and neurodivergent individuals can serve as a transformative experience, providing a sense of community and understanding.
The importance of having supportive relationships, especially for marginalized individuals, cannot be overstated. Many adults discovering their autistic identity find solace and community both online and in person, creating spaces where they can relate to others who understand their experiences.
However, it’s crucial to recognize the potential dangers of long-term masking, as it can lead to autistic burnout. Autistic burnout is characterized by intense, chronic exhaustion—physically, mentally, and emotionally—and is often accompanied by a decline in skills and reduced tolerance to sensory stimuli. Autistic women and nonbinary individuals are particularly vulnerable to burnout, along with the associated risks of depression, anxiety, and suicidal ideation. Acknowledging the impact of masking and advocating for supportive environments that allow authentic expression is vital for the well-being of autistic individuals, promoting mental health and reducing the risk of burnout.
Co-occurring Conditions
Autistic girls are more prone to co-occurring conditions, including depression, ADHD, anxiety, eating disorders, obsessive-compulsive disorder, tic disorders, and sleep disorders. The article explores the implications of delayed diagnoses on the prevalence of these conditions.
Causes of Autism in women and girls
The cause of autism remains unknown, although there is a tendency for autism to run in families. Despite this, there is no imperative need to uncover the origins of autism. With the rise of autistic self-advocacy, advocates have been challenging the notion that autism is a disease or syndrome requiring a cure or intensive research into its origin.
Autistic advocates emphasize the risks associated with seeking the cause of autism, drawing attention to the historical context of eugenics where knowledge about marginalized traits led to systematic eradication through practices like infanticide or genetic selection. Contemporary examples, such as the nearly nonexistent population of people with Down Syndrome in some European countries due to medical intervention, underscore the potential dangers of pursuing knowledge about the causes of neurodivergent conditions.
Autistic advocates argue that searching for the origin of autism linked to the quest for a cure, and both pursuits can have harmful consequences for autistic individuals. Instances of parents attempting harmful interventions, such as feeding their autistic children bleach, exemplify the dangers associated with the idea of finding a cure for autism.
Instead of focusing on the cause or cure, advocates stress the importance of understanding and learning from autistic individuals. Supporting autistic populations involves addressing significant issues they face, including housing instability, homelessness, economic insecurity, and limited access to medical, dental, and mental health care. Redirecting research and funding towards these disparities, along with supporting organizations and systems aiming to rectify them, is crucial for improving the lives of autistic individuals and promoting inclusivity and well-being in the neurodivergent community.
Diagnosis
There isn’t a single medical test for autism spectrum disorder; instead, the diagnosis relies on observations and specific screening tools. Caregivers, including those of adults seeking a diagnosis, typically complete questionnaires about the individual’s infancy, toddlerhood, development, behavior, and skills. Healthcare professionals may also use hands-on and observational tools to assess if a person meets the criteria for autism and to identify any co-occurring conditions.
According to the Centers for Disease Control and Prevention (CDC), approximately 1 in 54 American children diagnosed with autism, with a significant gender disparity—only about 1 in 4 autistic children are girls. This ratio, though widely accepted, may actually be closer to 1 in 3, indicating potential underdiagnosis in girls. The diagnostic tools currently considered the “gold standard” primarily reflect the autistic experiences of men and boys.
For adults seeking a professional diagnosis, the process can be time-consuming and costly. This situation creates a disparity, particularly for marginalized communities, including women. As a result, self-diagnosis has become a more accepted option within the autistic community. The acknowledgment of this disparity underscores the importance of promoting accessibility and inclusivity in the diagnostic process to ensure that all individuals, regardless of gender or background, have the opportunity to understand and embrace their neurodivergent identity.
Support and Treatment
There is currently no cure for autism, but various therapies and resources are available to assist autistic individuals. Some therapies may require prescription and oversight from healthcare providers, while others, such as behavioral and developmental therapies, can be administered by therapists, caregivers, or even undertaken independently by the autistic individual.
Several potential treatments for autism include:
- Speech therapy
- Play therapy
- Social skills therapy
- Occupational therapy
- Developmental therapies like Floortime, SCERTS, and relationship development intervention (RDI)
- Medications like Risperdal (risperidone) or selective serotonin receptor inhibitors (SSRIs) to address specific symptoms
- Applied Behavioral Analysis (ABA)
While ABA endorsed by some scientific organizations as a primary therapy for autistic individuals, there is opposition to it from autistic individuals and self-advocates. Critics argue that ABA often aims to make autistic individuals conform to allistic (non-autistic) behavioral norms, leading to potential negative outcomes, including the development of post-traumatic stress symptoms in some cases.
It’s important to recognize that there is no one-size-fits-all approach to treating autism, and what works for one individual may not be suitable for another. Autistic individuals, especially those diagnosed in adulthood, may have varying support needs, and their preferences for therapy can differ. Many adults seek support independently, engaging in talk therapy, social skills coaching, sensory integration therapy, and participating in support groups with other autistic adults. The emphasis is on providing personalized and respectful support that considers the unique needs and experiences of each autistic individual.
Conclusion
Autism in women and girls is often underdiagnosed or diagnosed later in life, and there are several potential reasons for this disparity. One significant factor is that the diagnostic criteria for autism often center around behaviors more commonly observed in boys, potentially leading to a biased perspective. Evidence also suggests that girls might be more adept at masking or hiding their autistic behaviors, and their special interests may be perceived as more “socially acceptable.”
It is not uncommon for women to discover they are autistic only in adulthood. However, obtaining a formal diagnosis as an adult can be a time-consuming and costly process. Autistic women are also more likely to have co-occurring mental health conditions such as anxiety, eating disorders, and obsessive-compulsive disorder, further complicating the diagnostic process.
While support can make a positive difference for autistic individuals at any age, early intervention is considered ideal. Addressing the underdiagnosis of autism in women and girls involves recognizing and challenging gender biases in diagnostic criteria and promoting awareness about the diverse ways autism can manifest across genders. It also emphasizes the importance of accessible and timely diagnostic processes to ensure that individuals, regardless of age or gender, can receive the support they need for better understanding and managing their neurodivergent experiences.
Source
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