Phoebe's Journey: Supporting Our 22yo/AuDHD/Epilepsy Daughter's Neurodivergent Strengths for Success

A creative thinker stands confidently in front of a wall filled with puzzle pieces and abstract designs, symbolizing the process of piecing together ideas and solving complex problems.

At roughly 2 years of age, when our daughter Phoebe was initially diagnosed with autism (and not long after with ADHD and epilepsy), my wife Suzy and I found ourselves thrust into unfamiliar territory. The conventional wisdom and clinical approaches thrust upon our family felt misaligned with whom we envisioned Phoebe was and who she could possibly become. Today, as she nears completion of her first year of college—a milestone many professionals once may have thought might be unattainable—I'm reflecting on the unconventional path that brought us here.

Recognizing the Early Signs and Trusting Our Instincts

Like many parents, we noticed differences in Phoebe's development early on. Research shows most caregivers identify first signs of autism between 12-18 months, though diagnosis often comes much later.1 Some families experience a frustrating gap between recognition and formal support, and thanks to Suzy, we decided not to wait for official validation before beginning our own approach to supporting Phoebe.

For example, and rather than seeing Phoebe as someone with deficits that needed fixing, we decided not to define her by diagnostic labels. We focused, instead, on understanding her neurological differences as unique characteristics that required appropriate support and accommodations.

This shift in perspective—recognizing Phoebe as differently abled rather than disabled—was one of our most important early choices. It’s important to note that we made this decision over 20 years ago, at a time when discussions contrasting the medical and social models of autism were far less common than they are today.40 We did so because it seemed then (and now!) to be the most kind, humane, and honoring approach.

Moving Beyond Traditional Approaches

One of our pivotal realizations was understanding that traditional demand-heavy parenting strategies weren't effective for Phoebe. Instead, we embraced what might now be called "low-demand parenting," which focuses on creating an environment where she could thrive without constant pressure to conform to neurotypical expectations.5

Certainly this wasn't always possible when faced with an early diagnostic timeline. After all, Phoebe was a toddler, and while her language and comprehension was yet to fully form, we did our best to not be typical "helicopter parents". Sometimes we were less than successful, other times we were able to allow her to thrive as an individual.

We discovered that presenting choices rather than directives dramatically reduced resistance. When we asked, "Would you prefer the blue notebook or the red one for math?" instead of "Get your math notebook now," Phoebe responded with engagement rather than shutdown.5 This approach honored Phoebe's need for autonomy while still accomplishing necessary tasks. It also sewed the seeds for greater independence, leading to critical thinking, being comfortable by herself, and eventually advocating in adult contexts as she does today as a college student.

Creating Personalized Technologies and Accommodations

Drawing on my background in audio engineering and my transition into neuroscience, I began developing sensory-based technologies specifically tailored to Phoebe's needs and others like her whose sensory sensitivity, distraction, anxiety, and fatigue have gone unsupported for decades.

The accommodations that I created for my daughter were never designed change her fundamental neurology but rather to accommodate her in challenging contexts like noisy restaurants, bright classrooms, or summer employment opportunities that were filled with sensory land mine. Importantly, Phoebe (and others in the community) helped me co-design alerts, filters, and gentle guidance accommodations that supported their performance, comfort, and autonomy in ways that a neurotypical person like me might never consider.5,6

The accommodations worked so well, I founded a company named after our daughter (www.Phoeb-x.com) that addressed the communities' sensory sensitivities, attention, and mental health needs, particularly in academic, employment and social environments. These personalized innovations helped regulate a person's unique sensory input, managing overwhelm while allowing them to participate more fully in educational, job, and social experiences. Most importantly, I combined my years of lived parenting, engineering experience, and community advocacy with active participation of hundreds of others who helped design these accommodations, ensuring they meaningfully addressed actual needs rather than what I might assume people needed.

Building a Foundation for Academic Success

As Phoebe progressed through school, Suzy and I recognized that traditional educational approaches often failed to engage her unique learning style. We advocated fiercely for appropriate accommodations while also supplementing her education at home.

Unlike the situation described in one of these Reddit search results,2 we ensured Phoebe's academic skills remained a priority, working collaboratively with her teachers to understand her curriculum and supplement it at home. We maintained high expectations while providing the necessary supports, understanding that scaffolding her learning didn't mean lowering our aspirations for her future.

When challenges arose with reading or mathematical concepts, we adapted teaching methods to align with her cognitive strengths rather than trying to force conventional approaches. We discovered that incorporating her special interests into learning materials dramatically increased engagement and retention.

Pivoting From Public To Private Education

And while Phoebe was mainstreamed in public school through grade 5, her middle school placement changed significantly. The administration decided to move her from an inclusive class with her friends to an extremely restrictive and specialized support class with only three students. When it became clear that this decision was driven by financial incentives for the school rather than by Phoebe’s best interests as a student, we began exploring other options and ultimately enrolled her in a welcoming, private school.

Although the prospect of meeting the substantial financial demands seemed overwhelming, we applied for—and successfully received—financial assistance from both the school and state-funded scholarship programs. What initially felt like an insurmountable mountain of paperwork and expenses turned into an incredibly supportive and rewarding three years. Phoebe thrived in a setting with much smaller class sizes and received loving, encouraging support from teachers, students, and families alike.

Fostering Independence Through Structured Support

As Phoebe approached high school, we focused on fostering her independence. Instead of doing things for her, we developed systems and routines that helped her take on more complex responsibilities herself. While we initially hoped to reintroduce her to the public school system, it soon became clear that the transition from small to very large class sizes would not serve her well. As a result, I took on the role of her homeschool instructor, supplementing her customized curriculum with after-school activities like chess and ping-pong clubs, as well as orchestra and band classes held at the local high school during the school day.

We implemented visual schedules, reminder systems, and organizational strategies that worked with her executive functioning profile rather than against it. These weren't crutches but tools—similar to how glasses help those with vision impairments navigate the world without changing who they are.

Throughout high school, we gradually reduced direct support while maintaining the accommodations that allowed her to succeed independently. The goal was never independence for its own sake, but rather giving Phoebe the ability to advocate for herself and manage her needs in preparation for college life.

Preparing for the College Transition

The transition to college represents a significant challenge for any student, but especially for those with complex neurodevelopmental profiles like Phoebe's. Research indicates that approximately 50,000 youths with autism spectrum disorders exit U.S. high schools yearly to enter adult systems of care,6 but many face significant hurdles in making this transition successfully.

We began preparing years in advance, focusing on several key areas:

Self-advocacy skills: We practiced scenarios where Phoebe would need to request accommodations or explain her needs to professors and peers.
Executive functioning: We implemented increasingly sophisticated planning systems that she could maintain independently.
Daily living skills: We ensured Phoebe could manage daily tasks from laundry to meal preparation to medication management.
Social navigation: We role-played social scenarios and developed strategies for navigating complex social environments.
Campus familiarity: We visited her chosen college multiple times before enrollment, mapping sensory-friendly spaces and identifying potential challenge areas.

Most importantly, we proactively connected with the college’s disability services office well before classes started, ensuring that Phoebe’s accommodations were established in advance rather than waiting for issues to arise. During this process, we discovered that nearly a quarter of the student body was neurodivergent, and that the college had already developed and refined strong, effective support systems to assist students like Phoebe. This advance planning gave us confidence that she would be well-supported from the outset.

The Outcome: Thriving in College

As Phoebe completes her first year of college, the results of our approach speak for themselves. While the transition hasn't been without challenges, she has demonstrated remarkable resilience and success. She's maintaining strong academic performance, has developed meaningful social connections, and most importantly, has grown in confidence and self-understanding.

What makes us proudest isn't merely her academic achievements but her self-advocacy and ability to navigate a complex environment while honoring her authentic self. She hasn't succeeded by hiding or masking her autism but by embracing her neurodivergent identity and utilizing the appropriate accommodations.

Lessons for Other Parents and Professionals

If I could share the most important lessons from our journey, they would be:

Trust your instincts about your child's needs, even when professionals suggest otherwise.
Focus on accommodation rather than change. The goal isn't to make your child neurotypical but to help them thrive as their authentic selves.
Involve your child in designing solutions. The most effective accommodations are those that address actual needs rather than perceived ones.
Maintain high expectations while providing appropriate support. Scaffolding doesn't mean lowering standards.
Prepare early for transitions, particularly the move to higher education or independent living.
Celebrate neurodivergent strengths rather than focusing exclusively on challenges.

Our experience with Phoebe has changed not only her life but also mine. It took me from music production to neuroscience, moving from theoretical knowledge to practical innovation. The assistive technologies we created for Phoebe have since aided many others with similar challenges.

As Phoebe continues her college journey, we remain committed to supporting her independence while honoring her neurodivergent identity. Her success isn't measured by how well she conforms to neurotypical expectations but by how authentically she can navigate the world on her own terms. That, perhaps, is the greatest lesson of all.