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Finding the Path to Diagnosis
Question: Tell me about your path to diagnosis.
Answer: My journey started with a childhood diagnosis of dyslexia. Years later, in 2014, a neuropsychological evaluation revealed significant deficits and complex learning disabilities. The turning point came when I met an adult with FASD whose challenges mirrored my own. That connection led me to NCFASD Informed, and eventually to Fullerton Genetics Clinic, where I received my diagnosis at age 51.
Receiving the Diagnosis
Question: When you received the diagnosis, what was your reaction?
Answer: Relief. It gave me a name and explanation for my lifelong difficulties. Receiving the diagnosis didn’t create new challenges—it simply named the ones I’d been living with all along. It replaced years of wondering what was “wrong” with a sense of clarity.
How FASD Shows Up in Daily Life
Question: What are the impacts of FASD in your life?
Answer: It has influenced virtually every area of my life: how I process information, how I learn, how I respond to sensory input, how I interact with people, and how I experience the world. My processing speed is slower, and learning takes significant time and effort. Short‑term and working memory challenges have shaped my academic and professional path. FASD is a whole‑body disorder—affecting my hand eye coordination, muscle tone, stability, coordination, and eye tracking.
Support Along the Way
Question: Who or what has been most helpful in your adult journey?
Answer: NCFASD Informed has been essential, and their Board Chair and Co-Founder Kathy Hotelling has played a key role. I wouldn’t be where I am today without her. My general practitioner has also made a meaningful difference by listening, taking me seriously, and supporting me.
Outside of those relationships, I have received relatively little support. I’m estranged from my family of origin, so I've had to depend on myself. Living with FASD while also having to advocate for yourself and explain difficulties that other people cannot necessarily see can require a tremendous amount of persistence.
Sharing the Diagnosis with Others
Question: What have you learned about sharing your diagnosis?
Answer: I’ve learned to be selective. Many people don’t understand FASD and become uncomfortable, make assumptions, or imagine the most severe presentation of the disorder. Because FASD encompasses such a wide range of abilities and disabilities, simply giving someone an umbrella diagnosis tells them very little about what I can or cannot do. I try to get a sense of whether someone will receive the information thoughtfully, and even then, I ask myself whether disclosure is truly in my best interest.
Using Strengths Strategically
Question: How do you use your strengths?
Answer: I have learned to focus on my strengths rather than expend enormous amounts of energy trying to overcome weaknesses that are neurological. I use technology to my advantage, including speech-to-text, text-to-speech, AI, alarms, and reminders. These tools allow me to compensate for difficulties with reading, writing, memory, and time.
Having to find alternative ways of doing things has strengthened my strategic thinking and pattern recognition, and I have become very good at creating systems and shortcuts that allow me to function effectively in my life. Instead of measuring myself by what my brain struggles to do, I work around those difficulties and put my energy into the areas where my brain is strong.
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