Diagnosis as the missing peace
For Sarah, receiving her autism diagnosis was a moment of profound relief. After 40 years of struggling to navigate social interactions, manage sensory sensitivities, and cope with anxiety, the clarity and validation provided by the diagnosis brought a sense of understanding and closure to her journey.
Throughout her life, Sarah had felt like she didn’t quite belong or fit in with her peers. She often found social interactions confusing and overwhelming, leading to feelings of isolation and frustration. She struggled with literal thinking, finding it challenging to interpret metaphors and figurative language. She didn’t like princesses or Barbies like her sister or the other children in her class. During recess, while her classmates were playing tag, Sarah was alone at the playground, drawing horses, or conducting experiments with rocks and sand. At home she immersed herself in the world of horses, dedicating countless hours to studying, memorizing, and categorizing different horse breeds and species. She became a walking encyclopedia of knowledge, able to identify and distinguish between horse species with astonishing precision.
Sarah’s expertise in horses went beyond factual information; it touched her on an emotional level. She developed a deep connection with these majestic creatures, understanding their nuances, personalities, and behaviors in a way that transcended mere knowledge. For her, horses were not just animals; they were companions, friends, and sources of solace and understanding in a world that often felt overwhelming and confusing.
As Sarah grew older, children started to mock her for her fascination. They would mimic horse sounds or mock her mannerisms related to horses. They would spread rumors or gossip about her behind her back, ostracizing her from the social circle. The ridicule and teasing became unbearable, causing Sarah to withdraw and stop talking about horses altogether. In an attempt to fit in with the cliques at school, Sarah altered her behavior and interests. She started pretending to like popular activities and subjects, such as sports and fashion, hoping to gain acceptance from her peers.
Her sister and the girls in her class started to experiment with make-up, and she heard them giggling about crushes on boys. Sarah tried hard to keep up with the beauty standards and fashion trends but she didn’t understand why anyone could find these things important. She learned to mask her autistic traits, camouflaging her differences to fit in and navigate social situations more smoothly. She pretended to have a crush on a boy, just to be a part of the conversation. She constantly felt like she was pretending to be someone she was not. The masking, acting, and scripting took a toll on her mental health. Sarah started to spiral into anxiety and depression as she struggled to maintain a facade that was not authentic to her true self. She started skipping meals to try look thin like the girls in her class, and felt dizzy, tired, and irritable. Sarah’s parents were worried and sought help from a doctor, who diagnosed Sarah with an eating disorder. The autism diagnosis, unfortunately, remained detected until Sarah was in her 40’s, and it left her vulnerable for many years. Seeing her sister, happily married with children, while Sarah never managed to find a partner, was a painful reminder of what she was missing in her life. She longed for companionship and connection.
With the diagnosis in hand, Sarah no longer felt alone in her journey. Connecting with the autism community and learning from the experiences of others who shared similar traits and experiences brought a sense of belonging and camaraderie that she had never experienced before. She found comfort in knowing that there were others who understood her perspectives and struggles, and she no longer felt the need to hide or suppress her true self. A year later, Sarah found her match, a man who shared her passion for animals and spent a lot of time helping out at an animal shelter. Their shared love for furry friends sparked an instant connection. He didn’t mind when Sarah talked endlessly about horses, and in return, Sarah became fascinated by his favorite animal: cats.
For Sarah, the relief that came with the diagnosis was not just about validation—it was about reclaiming her identity, embracing her authentic self, and finding a sense of belonging in a community that embraced and celebrated neurodiversity.
Identifying as Autistic.
When someone identifies as autistic, it typically means that they recognize and embrace autism as a fundamental aspect of their identity. This self-identification can occur with or without a formal diagnosis from a healthcare professional. Many individuals within the autistic community use identity-first language, such as “autistic person,” emphasizing that autism is an integral part of who they are.
For many people, identifying as autistic can be empowering. It can provide a sense of belonging to a community of individuals who share similar experiences, challenges, and perspectives. It can also lead to self-acceptance and understanding, as individuals connect with others who navigate the world through a neurodiverse lens.
Diagnosis of Autism.
Receiving a diagnosis of autism involves a formal evaluation by a healthcare professional such as a neurologist, or psychologist, typically based on criteria outlined in diagnostic manuals such as the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders). The diagnostic process may involve assessments, observations, and interviews with the individual and their caregivers.
A diagnosis of autism can be important for accessing support services, accommodations, and interventions tailored to the individual’s needs. It can provide clarity and validation, helping individuals and their families understand why they may experience certain challenges or differences in social communication, behavior, and sensory processing.
Sense of Community.
Whether someone identifies as autistic or receives a diagnosis of autism, both pathways can lead to a sense of community and belonging. The autistic community is diverse and inclusive, encompassing individuals with a range of experiences, abilities, and perspectives. Many autistic individuals find solace, understanding, and camaraderie within this community, whether they identify as autistic themselves or have a loved one who is autistic.
Misdiagnosed and missed diagnose.
Women and girls with autism spectrum disorder (ASD) are often misdiagnosed or not diagnosed at all.
Masking and social skills: Girls and women with autism may be more adept at masking their symptoms and mimicking neurotypical social behaviors, which can make it harder for clinicians to recognize the underlying difficulties they face. This camouflaging of autism traits can lead to delayed or missed diagnoses.
Stereotypes and social norms: There are societal stereotypes and misconceptions about what autism looks like, with a common perception that it primarily affects boys and manifests in specific ways. These stereotypes can influence how clinicians, educators, and others perceive and diagnose autism in girls and women.
Given the challenges faced by women and girls with autism in receiving timely and accurate diagnoses, there is a growing recognition of the need for increased awareness, education, and understanding of the unique presentation of autism in females. Improving diagnostic practices, addressing gender bias, and considering the full range of autistic traits and characteristics in assessment and intervention can help ensure that women and girls with autism receive the support and accommodations they need.
Ilse Gevaert is a psychologist and coach with expertise in neurodiversity (ASD and ADHD), giftedness, trauma, narcissistic abuse, and resilience. Ilse continued her education at prestigious institutions such as Harvard and Cornell, where she obtained leadership certificates that have informed her practice.
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