Autism Awareness: From Darkness to Light Ch 1: A Journey of Self-Discovery and Understanding in the Life of a Woman with Asperger's Autism

Living with Asperger's autism and being connected to the spiritual world has shaped every part of my life. At 43 years old, I look back on a childhood filled with confusion, pain, and isolation. I felt different from the very beginning, and that difference often felt like a heavy burden. This is my story—a journey through struggle, self-harm, misdiagnosis, and trauma, leading to a path of discovery about who I am, where I come from, and what I am truly capable of.

A quiet forest path representing a journey of self-discovery

Understanding the Underdiagnosis and Misdiagnosis of Autism in Women

The phenomenon of underdiagnosis and misdiagnosis of autism spectrum disorder (ASD) in women is a complex issue that has garnered increasing attention in recent years. Several interrelated factors contribute to this situation, leading to a significant disparity in the identification and understanding of autism in women compared to men.

Societal Expectations and Gender Norms

One of the primary reasons women may be underdiagnosed or misdiagnosed with autism is the influence of societal expectations and traditional gender norms. From a young age, girls are often socialized to be more accommodating, nurturing, and communicative. These societal pressures can lead to women developing coping mechanisms that mask their autistic traits. For instance, a girl may learn to mimic social behaviors or suppress her natural tendencies to fit in with peers, which can make her symptoms less visible to parents, educators, and healthcare professionals.

Differences in Symptom Presentation

Research indicates that the presentation of autism symptoms can differ significantly between genders. While boys may exhibit more overt behaviors such as hyperactivity or aggression, girls often display subtler signs of autism, such as anxiety, depression, or social withdrawal. These differences can lead to a failure to recognize autism in women, as their behaviors may not align with the stereotypical characteristics associated with the disorder. Consequently, healthcare providers may misinterpret these symptoms or attribute them to other mental health issues, further complicating the diagnostic process.

Lack of Awareness and Research

The historical focus of autism research has predominantly centered around male populations, leading to a lack of understanding of how autism manifests in women. This gender bias in research can result in healthcare professionals being less equipped to identify autism in females. Furthermore, diagnostic criteria have often been developed based on male presentations of the disorder, which may not adequately capture the experiences of women on the spectrum. This gap in knowledge contributes to a diagnostic overshadowing, where the presence of co-occurring conditions, such as anxiety or eating disorders, can obscure the underlying autism diagnosis.

Communication Styles and Social Interaction

Women with autism may also possess unique communication styles that differ from those typically associated with the disorder. They might be more adept at verbal communication and may engage in more socially acceptable forms of interaction, which can mask their difficulties. This ability to "camouflage" their symptoms can lead to a misdiagnosis of other conditions, such as social anxiety disorder or borderline personality disorder, as their social challenges may not be recognized as stemming from autism.

Impact of Co-occurring Conditions

Many women with autism also experience co-occurring mental health conditions, such as anxiety, depression, or obsessive-compulsive disorder. These additional diagnoses can complicate the clinical picture and lead to a focus on treating the co-occurring conditions rather than recognizing the underlying autism. As a result, women may receive treatment that addresses their symptoms but fails to address the root cause of their difficulties, prolonging their struggle with undiagnosed autism.

The Importance of Increased Awareness

Raising awareness about the unique presentation of autism in women is crucial for improving diagnostic practices. Training for healthcare professionals on recognizing the signs of autism in females, alongside advocating for more inclusive research, can help bridge the gap in understanding. Additionally, encouraging women to share their experiences can foster a more comprehensive understanding of autism and promote earlier and more accurate diagnoses.

Feeling Different from the Start

I was a bright child, showing signs of advanced intelligence as early as age four. My parents often remarked on my ability to grasp complex concepts that seemed to baffle other children my age. I could read at a early age, and I had an insatiable curiosity about the world around me. I would ask questions that delved deep into subjects, seeking answers that often left adults scratching their heads. However, by the time I was eight, I began to realize that I was fundamentally different from my peers in ways that extended beyond mere academic prowess in which eventually made me isolate myself.

As I navigated the early years of elementary school, I found myself increasingly aware of the social dynamics at play among my classmates. While they engaged in spontaneous games and laughed together, I often felt a sense of disconnection and always stayed by myself. I struggled to fit in, grappling with the nuances of social interaction that seemed to come effortlessly to others. Understanding social cues—those subtle signals that indicate how one should respond in conversation or play—was a challenge for me. I would observe my peers, trying to decode their laughter, their gestures, and their unspoken rules, but it often felt like trying to solve a puzzle with missing pieces.

Expressing myself in ways that others could relate to became another hurdle. I had a vivid inner world filled with ideas, stories, and thoughts, but translating that into language that my peers could understand was daunting. I often found myself using vocabulary that was too advanced or concepts that were too abstract for the typical conversations in the playground. My attempts to share my thoughts would sometimes lead to puzzled looks or dismissive comments, reinforcing my feeling of being an outsider looking in on a world that didn’t quite make sense to me.

This difference was isolating. I often sat alone during recess, watching groups of children form bonds and friendships that seemed so natural and effortless. I longed to join them, to be a part of their laughter and camaraderie, but the barriers felt insurmountable. I would sometimes muster the courage to approach a group, only to retreat when I felt the familiar pang of not belonging. The loneliness weighed heavily on me, and I often turned to books, home work, solitary activities as a refuge, immersing myself in stories that transported me to places where I felt understood, even if only by fictional characters.

As I continued to grow, I began to recognize that my experiences were not unique but rather a part of a broader spectrum. While I struggled with social interactions, I also developed a deep sense of empathy and a unique perspective on the world that allowed me to see beauty in things others overlooked. My differences, though isolating at times, also became a source of strength. I learned to appreciate my intellect and creativity, finding solace in the knowledge of my journey, though challenging, I was being shaped into a person with a rich inner life and a profound understanding of the complexities of emotions.

As I grew older, the weight of this difference became harder to bear. I began to harm myself around the age of 12 as a way to cope with the overwhelming feelings inside. The pain was both physical and emotional, a desperate attempt to find control in a life that felt chaotic.

Whispers and Nudges Leading to My Roots

During my darkest moments, when the weight of despair felt almost unbearable, I began to experience an intriguing phenomenon. Whispers softly echoed in my mind, almost like gentle nudges urging me to delve into the depths of my ancestry. These whispers were not mere figments of my imagination; they were compelling calls to action that guided me toward an unexpected journey of self-discovery. This exploration into my family history became a profound turning point in my life, transforming my perspective and illuminating paths I had previously overlooked.

As I embarked on this journey, I discovered that tracing my roots was more than just a genealogical exercise; it was a deeply personal quest that allowed me to connect with a part of myself that I had long ignored. With each piece of information I uncovered about my ancestors, I felt a growing sense of connection and continuity. I began to understand the struggles they faced, the sacrifices they made, and the resilience they exhibited in the face of adversity. This newfound knowledge helped me forge a link between my past and my present, allowing me to see my own life through a broader lens. It opened doors to understanding my identity in ways that transcended the pain and struggles I had endured.

Learning about my ancestors filled me with an overwhelming sense of belonging and pride. I discovered stories of courage, triumph, and perseverance that resonated deeply within me. Each narrative added a layer of richness to my understanding of who I am and where I come from. More importantly, this exploration helped me uncover hidden strengths and interests that I had never fully explored or acknowledged. I found inspiration in the lives of those who came before me, and their experiences ignited a spark within me, urging me to embrace my own potential.

This adventure was not just about genealogy; it was about reclaiming my story and redefining my identity. I began to see the threads of my ancestors' lives woven into my own, creating a tapestry rich with history and meaning. This journey has empowered me to embrace my heritage and to appreciate the complexities of my identity. I realized that I am not just a product of my circumstances; I am also a continuation of a legacy filled with strength, resilience, and hope. As I reflect on this transformative experience, I understand that the whispers I heard were not just random thoughts—they were guiding me toward a deeper understanding of myself and my place in the world.

Challenges in Relationships and Lasting Scars

Relationships have always been difficult for me, presenting a series of challenges that have persisted throughout different stages of my life. From adolescence through adulthood, including my experiences in marriage, I faced numerous obstacles that left deep emotional scars that are not easily healed. The inability to connect easily with others has been a recurring theme in my life, and when combined with my past trauma, it has made the process of forming and maintaining close bonds a constant struggle. Each relationship I attempted to forge often felt like an uphill battle, fraught with misunderstandings and emotional turmoil.

Being molested as a child added layers of complexity to my relationships that I struggled to navigate. The trauma of those early experiences created a profound impact on my ability to trust others, and intimacy quickly transformed from something that should be nurturing and comforting into a source of anxiety and pain. The feelings of vulnerability that accompany closeness became overwhelming, leading to a persistent fear of being hurt again. These experiences did not only affect my romantic relationships; they also significantly influenced how I interacted with my family members, friends, and even acquaintances. I often found myself withdrawing or putting up emotional walls, which in turn left me feeling isolated and alone, even when I was physically surrounded by people who cared about me.

This struggle with intimacy and trust often manifested in various ways. In romantic relationships, I would oscillate between wanting to be close to my partner and pushing them away out of fear. I would find myself second-guessing their intentions, interpreting their actions through a lens of suspicion that stemmed from my past or something they did or mentioned. This created a cycle of conflict where my partner's attempts to reassure me were often met with resistance, leading to misunderstandings and heartache on both sides. I often felt trapped in a paradox where the very connections I craved were simultaneously the source of my greatest fears.

Furthermore, my relationships with family members were equally fraught with tension. The inability to communicate my feelings openly and the fear of rejection made family gatherings a source of anxiety. I would often retreat into myself, feeling like an outsider within my own family. The lack of understanding from those around me only deepened my sense of isolation, as I struggled to convey the complexities of my emotional landscape. The scars from my past loomed large, casting shadows over what could have been supportive and loving relationships.

As I moved into adulthood, these patterns persisted, manifesting in both friendships and professional relationships. I often found it challenging to form lasting connections with colleagues, as the fear of being judged or misunderstood held me back from fully engaging with others. This led to a cycle of loneliness that was difficult to break, as I yearned for companionship but felt paralyzed by my past experiences. The emotional baggage I carried became a heavy weight, influencing every interaction and making it hard to forge genuine connections.

Ultimately, the journey of navigating relationships has been a complex and often painful one. The scars of my past continue to shape my present, influencing how I perceive and engage with the world around me. While I have made strides in understanding myself and my emotional needs, the path toward healing and building healthy relationships remains ongoing. It is a process that requires patience, self-compassion, and a willingness to confront the shadows of my past, all while striving to create a future where meaningful connections are possible.

Misdiagnosis and the Impact of Hypermobility EDS

For decades, I was misdiagnosed and labeled with various mental health conditions that did not fully capture the complexity of my experiences or the underlying issues I faced. This journey through misdiagnosis was not just a matter of clinical error; it was a profound struggle that affected every aspect of my life. One of the most significant and impactful misdiagnoses was related to a rare and complex condition known as hypermobility Ehlers-Danlos Syndrome (EDS). This condition, characterized by an abnormality in connective tissue, affected my body in ways that were often misunderstood or dismissed by doctors and those around me, leading to a cascade of challenges that compounded my difficulties.

The physical symptoms of hypermobility EDS are varied and can include joint pain, chronic fatigue, and a tendency for joints to dislocate easily, among others. These symptoms, when combined with my autism, created a unique set of challenges that were difficult for both myself and others to comprehend. My body felt like a foreign entity, one that did not function as expected. The constant pain and instability made it hard to engage in everyday activities, leading to feelings of frustration and helplessness. The intersection of these two conditions contributed to a profound sense of alienation, as I struggled to articulate my experiences to those who had little understanding of either condition.

As a result of my health issues, I lost many things I cared about deeply, including my sense of self and belonging within various social circles. The confusion surrounding my health and behavior often led to further isolation and misunderstanding from friends, family, and even medical professionals. People would see my struggles through the lens of their own perceptions, often attributing my difficulties to anxiety or other mental health issues rather than considering the physical realities of me having a spiritual connection with Allah, Autism, Hypermobility EDS, MCAS, POTS, temporal lobe and febrile seizures. This disconnect not only exacerbated my feelings of loneliness but also made it increasingly difficult to advocate for myself and seek appropriate care.

Moreover, the misdiagnoses and the ensuing lack of understanding from others created a perfect storm of emotional turmoil. I grappled with feelings of inadequacy and the fear that I would never be able to communicate my experiences effectively. The societal stigma surrounding both Autism and rare physical conditions further complicated my situation, as I often felt trapped between two worlds—one that dismissed my physical suffering and another that failed to recognize the validity of my struggles with autism. This duality left me feeling invisible and unheard, intensifying my sense of isolation.

Ultimately, this journey through misdiagnosis and misunderstanding has been a long and arduous path, marked by moments of despair but also by resilience. I have learned the importance of seeking knowledge about my conditions and advocating for myself in medical settings. While the road to understanding my health has been fraught with obstacles, it has also illuminated the critical need for awareness and education regarding both hypermobility Ehlers-Danlos Syndrome and autism. By sharing my story, I hope to foster greater empathy and understanding for those who, like me, navigate the complexities of living with multiple intersecting conditions.

Being Misunderstood: Multiple Personality and Seizures

I was also told I have multiple personality disorder, which is now more accurately referred to as dissociative identity disorder (DID). This diagnosis came with a barrage of other labels, including blacking out, trancing, and also I was experiencing temporal lobe seizures, and encephalopathy. Each of these terms not only added layers of complexity to my condition but also contributed to a profound sense of confusion and stigma that I faced daily. The medical community often struggled to understand the nuances of my experiences, and as a result, I was left with a series of misdiagnoses that felt more like a collection of symptoms than a coherent narrative of my life. People around me frequently misunderstood my connection to both the spiritual and earthly realms, failing to grasp the intricate ways in which my body and mind reacted to distress and trauma.

These experiences made it even harder to find support and understanding from those who were supposed to help me. Friends and family often viewed my struggles through a lens of fear, skepticism or being crazy, unable to comprehend the depth of my internal battles. I frequently felt isolated, as if I were trapped in a world that didn’t recognize or validate my existence. The labels attached to my condition seemed to overshadow the reality of my experiences, reducing me to a series of clinical terms rather than acknowledging the rich tapestry of my identity. Each time I tried to explain what I was going through, I encountered blank stares or dismissive comments that further alienated me from the very support I desperately sought. I often felt like I was fighting against a world that didn’t see me for who I really was, struggling to break free from the confines of misunderstanding and prejudice that surrounded me.

Why I Am Sharing My Story

After all these decades of navigating the complexities of my life, I have made the significant decision to write a book focused on raising autism awareness. This choice has been profoundly influenced by the experiences I've had with my family—specifically, how my mother, father, and my husband's side of the family have treated me over decades. Their lack of understanding regarding my conditions has often led me to feel the need to isolate myself from them. This self-imposed distance is a protective measure, allowing me to shield myself from emotional harm that arises from their inability to recognize that I have Asperger's autism, a condition that shapes my interactions and perceptions of the world around me. Moreover, I possess unique connections to the spiritual world, which further complicates my experiences and how I relate to those around me.

My primary goal in writing this book is to illuminate the myriad struggles that individuals on the autism spectrum face daily. Society, as a whole, often fails to grasp the intricacies of our experiences, leaving many of us feeling marginalized and misunderstood. While some may view our coping mechanisms as peculiar or challenging, it is essential to understand that these behaviors are not merely quirks; they are deeply rooted responses to a world that frequently does not accept or accommodate our differences as being Allah's chosen ones. Each of us navigates life through a lens shaped by our unique neurological wiring, and it is vital for others to appreciate the context behind our actions and reactions.

Honestly, I believe we are not seen as fully human in my eyes but considered earth angels. This lack of recognition can lead to profound feelings of pain and isolation. Many people, upon learning that someone is autistic and connected to Allah's covenant, tend to reduce us to mere labels such as crazy, sorcerer, bad, or even mean, failing to see the rich tapestry of our identities that extends far beyond our connection to angels, jinns, Allah and our past ancestors. By sharing my personal story and the challenges I have faced having this connection to the spiritual world, I hope to foster a deeper sense of empathy and understanding regarding the experiences of those who have Asperger's autism, Hypermobility EDS, left handed, and bare the Y, holy cross, half moon, butterfly, and M crescent on their palms. I also aim to shed light on the spiritual aspects of my life, which often go unnoticed or are dismissed, yet play a significant role in how I perceive and interact with the world.

Ultimately, my aspiration is to connect with others who may feel lost or misunderstood in their own journeys. Through the pages of my book, I hope to provide a sense of community and validation for those who share similar experiences. By openly discussing the struggles and triumphs associated with autism and the spiritual realm, I aim to create a dialogue that encourages acceptance and support. It is my belief that by fostering understanding, we can begin to dismantle the barriers that isolate us and build a more inclusive society where all individuals, regardless of their neurological differences, can thrive.

Finding Strength and Potential

Despite everything I have faced throughout my life, I have discovered strengths I never knew I had. This revelation has been nothing short of transformative. By delving deeply into my ancestry, I have unearthed a rich tapestry of history and stories that connect me to my roots in ways I had previously overlooked. Each discovery about my family lineage has not only provided me with a sense of belonging but has also illuminated aspects of my identity that were obscured by decades of pain, confusion, and misunderstanding. This exploration has been akin to peeling back layers of an onion; with each layer removed, I uncover hidden facets of myself that were waiting to be acknowledged and embraced. In addition to exploring my ancestry, I have also taken the time to reflect on my interests and passions. Engaging in activities that resonate with me has allowed me to unlock parts of myself that I had long neglected. Whether it is through creative expression, such as writing poetry and literature, or through the pursuit of knowledge in areas I am passionate about, I am learning to embrace my unique perspective and abilities. This journey of self-exploration has been empowering, as I recognize that my individuality is not a burden but a gift that adds value to the world around me.

This journey is ongoing, but I am moving from darkness into light, one step at a time. Each day brings new challenges, yet also new opportunities for growth and understanding. I want others to know that even when life feels overwhelming, when the weight of despair seems unbearable, there is hope for self-discovery and acceptance. The process may not always be easy; it often requires patience, confronting uncomfortable truths and past traumas. However, the rewards of this inner work are profound. By embracing our vulnerabilities and acknowledging our strengths, we can forge a path toward healing and self-acceptance. As I continue on this path, I am inspired to share my experiences with others. I hope to encourage those who may feel lost or trapped in their own struggles to embark on their own journeys of self-discovery. It is essential to remember that we are not defined by our pasts but rather by how we choose to respond to them. With patience and perseverance, we can all find our way to the light, uncovering the beauty of our authentic selves along the way.

In Conclusion

Sharing my story is not just about my past. It is about creating a future where people with Asperger's and other forms of autism are understood and supported. Awareness leads to compassion, and compassion leads to change.

If you or someone you know struggles with feeling different or misunderstood, remember that you are not alone. Seeking help, exploring your identity, and connecting with others who understand can make a difference.

Together, we can build a world where everyone’s unique mind and heart are valued.