Unlocking Clarity: The Journey Of A Late-Diagnosed Neurodiverse Woman In The U.S.

Introduction

Living as an Undiagnosed Neurodiverse Woman

I have found that living with an undiagnosed neurodiversity is like walking through a maze without a map. Its disorientating and leaves you in a constant state of confusion. Low self esteem is common among those like me due to missed appointments, forgotten assignments, and late or unpaid bills. To social mistakes and faux-pas that leave everyone feeling uncomfortable and us confused.

The journey is full of unexpected turns, dead ends, and once that diagnosis comes, moments of clarity in hindsight.

For women, like me, who are diagnosed with neurodiversity later in life, these revelations bring both relief and a torrent of questions about past challenges. This article attempts to peel back the curtain on the life of a late-diagnosed neurodiverse woman, intertwining personal anecdotes with research and statistics to bring to light the nuanced experiences of women with ADHD and autism.

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The Unseen Struggle

The Challenge of “Black-and-White Thinking”

For years, my life felt like an unsolvable puzzle. My “black-and-white thinking” often left me bewildered and lost in a world that thrives on shades of gray. Simple misunderstandings could unravel my day,

Neurodiverse couple having an argument eurocentric female with blonde hair argues with a afrocentric male

Neurodivergent woman walking through a path of trees

leaving me to piece together where things went wrong. My all or nothing thinking resulted in overperformance in some areas and not performing in others. Missed social cues had people upset with me and I had no clue as to why. Looking back, with my therapist, it has become so clear. This literal approach to life, while occasionally amusing to friends and family, made social interactions a minefield of potential misinterpretations and hurt feelings.

The Daily Impact of Inattention

Inattention, which is a hallmark of my undiagnosed ADHD, brought its own set of challenges. Forgotten appointments and misplaced keys were regular occurrences, but the more prominent moments—missed deadlines and overlooked details—left me feeling like a failure. Forgotten meals, bathroom breaks, and medications has resulted in long term damage to body systems I will deal with for the rest of my life. Forgetting meal times for my kid, I will never forgive myself for. Thank the gods kids can scream at you.

Yet, this scattered focus brought unexpected lightness to tense situations, a creativity that gives me joy, and a reminder that there’s more to life than a perfectly executed plan.

A Journey of Self-Discovery

The Turning Point: Seeking Answers as a Neurodiverse Woman

My mid-twenties brought a turning point. Burnt out and battling post-partum depression, I began my search for answers. I refused to take anything off the table. Conditions like BPD-Borderline Personality Disorder, Bipolar Depression, and Manic Depression were all on the table. I eventually got the approval to see a psychiatrist after 3 solid years of trying to find answers on my own.

The Road Through Misdiagnosis

First, he diagnosed me with ADHD-Attention Deficit Hyperactivity Disorder, which was not really a surprise considering my family history and a good look at the criteria. He also diagnosed me with cPTSD and OCD, and he suspected “baby-bipolar,” also called cyclothemia. Characterized by mood swings over a period of years that go from mild depression to emotional highs, Cyclothemic disorder is currently believed to be rare. Its my opinion that its not real. These people likely have cPTSD, but that’s another post for another day.

While I didn’t feel like that last one fit the bill entirely, I figured at this point. I’ll try the meds; I would have my answer if they worked. I was desperate and felt broken. The problem: the meds did not only not work, they made things worse. My extreme people-pleasing as a result of the cPTSD(complex Post Traumatic Stress Disorder), however, refused to let me admit that to the doctor. Ever so desperate to please others I kept my concerns to myself. So I told him they worked, “but can we use a lower dose?” He had me taking half of a 1mg Abilify, and honestly, nothing. I felt nothing, as in numbness. Not a good feeling.

Neurodiverse Woman sits at desk with her hands in her hair as if in frustration. Eurocentric woman with blonde hair dark framed glasses a white "flouncy" blouse and a white laptop sits in front of her. — “Woman Working” by Kristin Hardwick/ CC0 1.0

It was the wrong diagnosis. So, after my insurance changed, I dropped the med and decided ADHD would have to suffice for now. So then I began the search for a medication I could take. See, Adderall helped loads; the problem was that I had apparently developed a heart condition. Inappropriate sinus node tachycardia – Idiopathic origins. Basically, they don’t know why my heart beats so fast. My current cardiologists(I have seen a few) think it was the 30 or so years of extreme stress that rewired my brain. *shrug*

Finding the Right Diagnosis: A Relief and a New Beginning

By this point, my family moved back to Washington State in 2020, and we started the search for a therapist. Maybe the issue was the trauma?

Between 2 therapists, a psychiatrist, and “peer review,” it turns out my son didn’t just get his autism from his father. The kid got a double dose. And my story? Of misdiagnosis and potential personality disorder? Practically textbook for women with autism. If TicTok has taught me anything, my story is typical in our community.

I stumbled upon the term “neurodiversity.” The more I learned, the more the pieces began to fit. A late diagnosis was both a balm to raw nerves and a revelation. It explained the intense emotions, the forgetfulness, and the feeling of being perpetually out of step with the world. The miscommunications and living life in a constant state of confusion finally, FINALLY, had an answer.

Neurodiverse Woman makes a gesture to communicate she does not know

Statistics and research underscore the challenges faced by late-diagnosed women. According to a study published by the National Library of Medicine, women are often diagnosed later than men, leading to years of misunderstanding and missed support opportunities. This delay in diagnoses can exacerbate feelings of isolation, anxiety, and depression as these women struggle to navigate a world that doesn’t cater to their neurodiverse needs.

Finding my “tribe” has given me a sense of community and “sameness” that I have never before experienced.

Embracing Neurodiversity

Understanding My Neurodiversity: A Journey of Self-Acceptance

Understanding my neurodiversity has been a journey of self-acceptance. Recognizing the reasons behind my “failures” allowed me to reframe my experiences. What once seemed like insurmountable obstacles are now challenges to be navigated with patience and self-compassion. I understand the why now, and the why really does make all the difference. I can also, with the help of my therapist, find trainings for things that, for neurotypical people, are naturally picked up. Like for example social cues and body language.

The feeling of being overwhelmed in social situations, coming home after a party or even a small gathering, and feeling like my head was in a fishbowl had a reason—and, more importantly, a solution. I finally allowed myself all the accommodations I had been making for my son. It may seem simple, but to someone who has never been allowed, the diagnosis was the permission needed to give myself grace, accommodations, and kindness.

Finding My “Tribe”: The Importance of Community

Resources for neurodiverse individuals have been a lifeline. Online communities, support groups, and professional resources offer practical advice and a sense of belonging. Social media, specifically TicTok, has provided me with the community I have always lacked. Hopefully, the ban will fail, or I will lose something more precious that I can express. Belonging.

For those on a similar path, the Autism Society of America and the Attention Deficit Disorder Association are 2 of many invaluable resources.

Autism is a type of neurodiversity often misdiagnosed in women as a personality disorder

Mother and son play in a water sensory table, they both have dark hair and wear mustard colored long sleeve shirts

Afrocentric woman lays on her elbows on the floor amongst many books open to pages as if she is researching extensively

A Message of Hope and Solidarity

To My Fellow Late-Diagnosed Neurodiverse Women

To my fellow late-diagnosed neurodiverse women, know that you are not alone. Our experiences, as varied and unique as they may be, bind us together in a shared journey of discovery. It’s a path that is marked by challenges but also by incredible insights and the joy of truly understanding oneself.

**To the medical professionals, its ok to say you missed something. Let’s be frankly honest, women have been given the short stick by medicine for…well… since the beginning. From the torture committed on enslaved women for the discovery of gynecological practices; to the exclusion of women in scientific research until recently, we know that most doctors practicing today are not at fault for the misogyny in medicine. But you are responsible for stopping it. For decades research indicated that neurodiversity was a strictly male trait, but, we now know that to be wrong. Please keep learning.**

It is my sincere hope that science will finally shake off the misogyny that has been woven into its fabric since the first utterance of “hysteria” passed some fool’s lips and treat women as the humans we are. We are not “small men” to give smaller doses to; or “hyper-emotional, hormonal wrecks.” As has been the excuse given for keeping women out of studies. We are humans of a different gender, and we need science to treat us as such.

For example, Did you know they still teach in some medical schools that the cervix doesn’t have nerve endings? Ah, 3 colposcopies, a cone procedure, and childbirth will vehemently disagree. Only a man who has never hit the cervix would think that…

A Call to Medical Professionals

Let this article serve as a conversation starter—a way to bridge the gap between personal experiences and the broader neurodiverse community. Sharing our stories fosters a deeper empathy and understanding, paving the way for a more inclusive and supportive society.

Autistic family of asian heritage stand in front of dark wall

Conclusion

Embracing Our Neurodiversity: A Vital Part of Who We Are

The journey of a late-diagnosed neurodiverse woman is fraught with challenges, but it’s also rich with opportunities for growth and self-discovery. As we navigate our unique paths, let’s remember to extend compassion to ourselves and others. In doing so, we not only embrace our neurodiversity but also celebrate it as a vital part of who we are.

To medical professionals and allies, your support and understanding can make all the difference. Let’s work together to build a world that recognizes the strengths of neurodiversity and provides the support needed to thrive.

In closing, my message to fellow neurodiverse women is one of hope and solidarity. You are not alone in your journey. Together, we can navigate the complexities of neurodiversity, finding joy and understanding in the beautiful tapestry that exists within the human experience.

DjinniWhispers

Resources and Citations

External Links for Further Reading:

Attention Deficit Disorder Association:https://add.org/
- A valuable resource for individuals with ADHD, offering support and information.
The Neurodiverse Woman: Navigating a World of Neurotypicality: https://www.ndwomanpod.com/
A podcast of Neurodiverse women helping women

Understanding ADHD in Adult Women: https://www.helpguide.org/ ADHD in women: Symptoms, Treatment, and Support

Exploring the Spectrum: Autism in Women and Girls: Research Study: A Qualitative Exploration of the Female Experience of Autism Spectrum Disorder (ASD)
- The National Autistic Society (https://www.autism.org.uk/) provides comprehensive information on autism, including insights specific to women and girls.
- Look for resources on sites like ADDitude Magazine (https://www.additudemag.com/), which often features articles on ADHD in women.

DjinniWhispers

Mosaics Within My Mind