top of page
Search

The Diagnosis That Changed Everything—But Not How You Think

<5 minute read

Copyright © 2018-2025 Dr David P Ruttenberg. All rights reserved.


A beautiful diamond illustration reflecting how neurodifferences like autism, ADHD, and epilepsy emit colorful characteristics like brilliance, unique systems views, confidence, and advocacy.
Features, Not Bugs: By shifting our perspective—by tilting the prism—we transform diagnoses like Autism, ADHD, and Epilepsy into the essential elements of Brilliance, Unique Systems View, Confidence, and Advocacy.


When Phoebe was 18 months old, our family left a series of appointments armed with new labels—autism, ADHD, intractable epilepsy—but few answers (Ruttenberg, 2025). While people spoke kindly, the subtext felt like a polite apology for a future that hadn’t started yet. My wife Suzy and I sat with two kinds of fear, but looking at Phoebe’s intense gaze and sense of humor, we promised to parent the child we had, not a brochure version of who she was supposed to be. The labels would inform us but never define her (Ruttenberg, 2025).


Grieving Expectations, Embracing Reality

The early weeks were loud with worry and grief for expectations we never realized we had (Hasson-Ohayon et al., 2024). Turning big feelings into small, practical questions—What helps mornings go smoothly? Which rooms drain her?—gave us direction and control. Each tiny improvement led to faster progress, helping us soften the sharp edges of uncertainty (Halla et al., 2024).


Two Models, Two Futures

Quietly, we stepped away from “fixing” Phoebe to fit the world and focused on shaping her world to fit her needs. The medical lens helped us make smart decisions, but the social lens—redesigning home and school, supporting Phoebe’s sensory needs, attention, anxiety, and fatigue—opened broader possibilities (American Psychological Association, 2023; American Psychiatric Association, 2023). Used together, these models fueled hope for a bigger, more flexible future.


Structure That Breathes

Authoritative parenting, often mistaken for rigidity, paired warmth with routine. Clear beginnings and endings, genuine choices, and flexible routines built Phoebe’s confidence and reduced family conflict (García-González et al., 2024). Over time, this approach provided the foundation for growth in our family and many others (Quinn & Guralnick, 2020).


Gentle Experiments

At home, we treated daily life as a series of gentle experiments: describe steps aloud, offer two good choices, practice patience. When we wrapped learning around what Phoebe already loved, skill and joy grew naturally. Research confirms that parent-led involvement supports communication, adaptation, and family wellbeing while reducing stress (Bradshaw & Wolfe, 2022; Han & Kim, 2025).


Meltdowns and Returning to Calm

A meltdown isn’t bad behavior—it’s the body expressing its limits (Ruttenberg, 2025). Our role as parents was to guide Phoebe back to calm. Rituals—soft lights, gentle pressure, music, and water—helped. Later, we’d review what made things hard and pick one small thing to try differently next time. Planning for hard days is an act of kindness, not pessimism (Zaidman-Zait & Mirenda, 2018).


Engineering Belonging

Small changes—swapping bulbs, reducing clutter, choosing soft fabrics, making quiet spaces—supported everyone, not just Phoebe (American Psychological Association, 2023). We advocated for clear classroom routines and sensory-friendly supports, which benefit all students (Centers for Disease Control and Prevention, 2025).


From Diagnosis to Garage Tinkering to Wearable Tech

Some challenges needed tools that didn’t exist, so our garage became a lab. We designed simple wearables to help Phoebe notice environmental changes before they became overwhelming—a gentle nudge, a vibration, or a prompt. The goal was always more agency, not surveillance, and more choices, not compliance (Siri & Scassellati, 2024; Charlton, 1998).


Belonging, Self-Advocacy, and Flexible Routines

Real community meant nurturing joyful, meaningful play that worked for Phoebe. Parallel activities, structured transitions, and kind exits allowed her to thrive. Self-advocacy—modeling phrases like, “I do best with written instructions”—grew naturally, not as a special privilege but as honest communication (American Psychological Association, 2023).


The First–Then–Choice Toolkit

We relied on the “first–then–choice” strategy: first the anchor task, then the preferred task, with a meaningful choice (Quinn & Guralnick, 2020). This approach reduced pushback and increased buy-in. Practical examples:


  • “First shoes, then tablet—drawing or music?”

  • “First math, then play—bike or trampoline?”Clarity, visuals, and follow-through made daily transitions smoother.


The Spiral Staircase of Progress

Progress wasn’t linear; it was a spiral staircase—sometimes we hit the same wall, but at a higher level each time. Fundamentals like sleep, movement, hydration, and energy budgeting were essential, especially during school transitions (Zaidman-Zait & Mirenda, 2018).


Final Thoughts

There are no silver bullets, only practical craft and compassion (Ruttenberg, 2025). Listen first, measure gently, change the environment when possible, teach in calm, and protect dignity. Build for the person, not the project—skills and confidence will follow (Ruttenberg, 2025).


References

American Psychiatric Association. (2023). What is autism spectrum disorder? https://www.psychiatry.org/patients-families/autism/what-is-autism-spectrum-disorder

American Psychological Association. (2023). Autism spectrum disorder. https://www.apa.org/topics/autism-spectrum-disorderBradshaw, J., & Wolfe, K. (2022). 

Advances in supporting parents in interventions for autism spectrum disorder. Pediatric Clinics of North America, 69(4), 645–656. https://doi.org/10.1016/j.pcl.2022.04.003

Centers for Disease Control and Prevention. (2025). Data and statistics on autism spectrum disorder. https://www.cdc.gov/autism/data-research/index.html

Charlton, J. (1998). Nothing about us without us: Disability, oppression and empowerment. University of California Press.

García-González, A., Fuentes-Biggi, J., & Elgier, A. M. (2024). Relationship between parenting educational styles and wellbeing in families with autistic children: A systematic review. Journal of Intelligence, 14(6), 101. https://doi.org/10.3390/jintelligence14060101

Halla, K. M., Bradshaw, C., & Law, K. (2024). Parents and guardians' experiences of barriers and facilitators in accessing autism spectrum disorder diagnostic services for their children: A qualitative systematic review. JBI Evidence Synthesis, Advance online publication. https://doi.org/10.11124/JBIES-23-00332

Han, A. R., & Kim, K. M. (2025). A meta-analysis of parent-mediated intervention programs for children with autism spectrum disorder. Korean Society of Occupational Therapy, 33(2), 1–15. https://doi.org/10.14519/ksot.2025.33.2.001

Hasson-Ohayon, I., Goldblat, C., & Serfaty, Y. (2024). The lived experience of parents of children with disabilities as service users: A transformative learning theory perspective. American Journal of Orthopsychiatry, 94(5), 519–529. https://doi.org/10.1037/ort0000783

Quinn, E., & Guralnick, M. J. (2020). Early intervention with parents of children with autism spectrum disorders: A review of programs. Journal of Educational and Developmental Psychology, 10(2), 1–13. https://doi.org/10.5539/jedp.v10n2p1

Ruttenberg, D. (2025). Raising a Changemaker: A Neuroscientist Father’s Guide to Empowering Neurodivergent Children [Manuscript introduction]. Unpublished manuscript.

Siri, K., & Scassellati, B. (2024). AI technology to support adaptive functioning in individuals with neurodevelopmental conditions: A systematic review. npj Digital Medicine, 7, 1–11. https://doi.org/10.1038/s41746-024-01355-7

Zaidman-Zait, A., & Mirenda, P. (2018). The association between emotional and behavioral problems in children with autism spectrum disorder and psychological distress in their parents: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders, 48(9), 3123–3144. https://doi.org/10.1007/s10803-018-3564-4


About the Author:


Dr David Ruttenberg PhD, FRSA, FIoHE, AFHEA, HSRF is a neuroscientist, autism advocate, Fulbright Specialist Awardee, and Senior Research Fellow dedicated to advancing ethical artificial intelligence, neurodiversity accommodation, and transparent science communication. With a background spanning music production to cutting-edge wearable technology, Dr Ruttenberg combines science and compassion to empower individuals and communities to thrive. Inspired daily by their brilliant autistic daughter and family, Dr Ruttenberg strives to break barriers and foster a more inclusive, understanding world.

Comments

bottom of page