Before We Knew: From Diagnosis to Discovery

David Ruttenberg
1 day ago
3 min read

<5 minute read

A picture of the cover and title of my forthcoming book "Raising Your Change Maker: A Neuroscientist Father's Guide to Empowering Neurodivergent Children". Includes a picture of four children and a photo of Dr David Ruttenberg — A mock-up cover from my upcoming book: "Raising Your Change Maker: A Neuroscientists Father's Guide to Empowering Neurodivergent Children" by Dr David Ruttenberg.

In 2004, when my wife Suzy and I prepared for the birth of our daughter, Phoebe, we had everything planned. The nursery walls were painted with clouds, a spreadsheet tracked developmental milestones, and our bookshelves were filled with parenting guides promising insight into raising bright, confident children. But, as many parents discover, plans have a way of unraveling in the face of reality.

The Shift We Couldn’t Ignore

Phoebe’s first months followed the expected rhythm—rolling over, sitting up, babbling. Then, around six months, something shifted. Eye contact grew fleeting, and everyday noises became overwhelming. While well-meaning voices told us not to worry—“Einstein didn’t talk until he was four!”—our intuition told a different story.

By 18 months, after a battery of evaluations, we heard the words that changed everything: Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). In 2004, this diagnosis placed us in what many families described as “diagnostic limbo.” PDD-NOS meant that Phoebe displayed many features of autism but didn’t meet all the specific criteria for what was then “Autistic Disorder” or “Asperger’s Syndrome” (American Psychiatric Association [APA], 2000).

A System in Transition

That ambiguity reflected a broader issue in the field. Before 2013, the DSM-IV divided autism-related conditions into multiple categories, often creating confusion among clinicians and parents alike (Lord & Bishop, 2015). When the DSM-5 unified these under the single umbrella of Autism Spectrum Disorder (ASD), it brought long-awaited clarity (APA, 2013).

Families like ours finally had language that matched our experience. The spectrum model recognized that autism wasn’t a binary condition but a range of support needs and strengths—a shift that validated Phoebe’s early journey.

Choosing Understanding Over Diagnosis Fear

In those early years, we devoured every study and therapy recommendation. We wanted answers, maybe even cures. But one quiet night, Suzy closed her laptop and said, “We’re doing this wrong. Phoebe isn’t sick. She’s Phoebe.”

That realization transformed our approach. We stopped trying to “fix” her and started listening—to her rhythms, her fascinations, her silences. Neuroscience would later give me frameworks for sensory processing and neuroplasticity (Frith, 2003; Happé & Frith, 2020), but what mattered most wasn’t in the textbooks—it was the promise we made that night:

To parent the child we had, not the one we imagined.
To learn from Phoebe as much as we taught her.
To protect her dignity, always.

Redefining Hope

Today, Phoebe is an adult who thrives with self-awareness and agency. She advocates for herself, designs tools to support others, and reminds us daily that difference is not deficit.

This story—and my forthcoming book, Before We Knew—is not about curing autism but about celebrating neurodiversity, compassion, and design thinking that adapts the world to fit the individual, not the other way around. Research continues to affirm that early understanding, acceptance, and adaptive support foster better long-term outcomes for autistic individuals (Pellicano & den Houting, 2022).

If you’re just starting your journey, here’s the one truth we wish we’d heard: You will figure this out, and your child will surprise you.

References

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). APA Publishing.

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). APA Publishing.

Frith, U. (2003). Autism: Explaining the enigma (2nd ed.). Blackwell Publishing.

Happé, F., & Frith, U. (2020). Annual research review: Looking back to look forward—Changes in the concept of autism and implications for future research. Journal of Child Psychology and Psychiatry, 61(3), 218–232. https://doi.org/10.1111/jcpp.13176

Lord, C., & Bishop, S. L. (2015). Recent advances in autism research as reflected in DSM-5 criteria for autism spectrum disorder. Annual Review of Clinical Psychology, 11, 53–70. https://doi.org/10.1146/annurev-clinpsy-032814-112745

Pellicano, E., & den Houting, J. (2022). Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science. Journal of Child Psychology and Psychiatry, 63(4), 381–396. https://doi.org/10.1111/jcpp.13441

#Neurodiversity #AutismAcceptance #Parenting #Inclusion #EthicalAI #ScienceCommunication #DifferentIsBeautiful #BeforeWeKnew

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.