About the Author: S. M. Korhonen writes about family life, disability, and public systems. With a background in engineering and complex systems work, Korhonen brings an evidence-driven lens to lived experience, tracing how assumptions harden into practice and how institutions struggle to see what does not fit their expectations. An excerpt from Body of Evidence: Disbelief, Hidden Disability, and Systemic Harm.
For many families of PDA children, the hardest part is not only the distress itself. It is the disbelief that follows.
A child may hold it together in one setting and fall apart in another. They may speak beautifully to an evaluator, complete a structured task, and appear entirely ready for the expectations placed in front of them. Then, later that same day, they may be unable to enter a classroom, tolerate a transition, accept a direction, or recover from a demand that others see as a completely reasonable request.
For years, this gap left me stranded. I knew what I was seeing, but I also knew how easily others could miss it. The following excerpt from A Body of Evidence takes place during an early special education evaluation, before we had the language of PDA. My son was almost four. At daycare, incident reports were accumulating quickly. At the evaluation center, however, he looked fine.
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Again, we watched through a one-way window as the assessments unfolded, now in more detail, focusing on the areas flagged by the screening team. And once again, it was a good day for my son, perhaps even more so than last time. Perhaps the relief away from daycare was even greater now. He didn’t seem to take offense at any of the evaluators and didn’t have any trouble completing the tasks. Their notes reflected this ease.
The Language assessments concluded that my son had:
Age-appropriate language and speech skills in all areas.
And not only were his skills age-appropriate, but:
To communicate his intentions, B uses not only nonverbal strategies but long, complex sentences.
Motor Assessments concluded:
Demonstrates gross and fine motor skills within normal limits for his age.
And not only were his motor skills age-appropriate, but:
Throughout small motor tasks, B participated but also added some of his own requests.
They observed slight sensory sensitivities during the evaluations. However, they diminished those observations, as unnoticeable to the evaluator:
B is bothered by some noises and scents that are not noticed by others.
The Academic Performance Assessment also went smoothly, and they concluded:
B is ready to participate in classroom activities. He is ready to transition smoothly through the routines of the day.
B is ready to interact positively with peers and teachers when problems arise.
On paper, this child was thriving. Dread was creeping in as I stared through the one-way glass.“They aren’t seeing it,” I whispered to my husband as we watched their evaluation unfold.
He nodded in response, keeping his gaze fixed. Once the evaluations were over, they took us to the lobby and explained how well they went. Their decision was clear; I knew what it would be.
They were showing us to the door, but I wasn’t moving. I needed them to understand. So I dug through my bag, took out the 23 incident reports documenting the reality unfolding at the daycare, and held them out to one of the evaluators.
“Please, look at these incident reports. He seems fine today, but we’re not fine.” I kept my arm outstretched. “Please.”
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At the time, I did not know the language of PDA. I did not yet understand the centrality of autonomy, demand pressure, threat perception, and felt safety. I did not know how often children like mine could appear capable in one setting and become completely overwhelmed in another. I only knew that the official conclusions did not match the life we were living.
That mismatch would become one of the central patterns of our story. Again and again, adults saw ability and assumed access. They saw language and assumed communication. They saw intelligence and assumed control. They saw a child who could do something under one set of conditions and concluded he should be able to do it under another.
When he could not, the explanations narrowed: motivation, non-preferred tasks, attention seeking, reinforcement, functional communication, behavior.
Over time, it became increasingly clear to me that the problem was not whether he had the skills, but whether he could access them under the conditions being imposed.
That realization changed how I understood the reports, the incidents, the failed plans, and the child who “seemed fine” until he did not. And over time, we accumulated the evidence we needed to challenge the dominant lens of interpretation.
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Read A Body of Evidence: Disbelief, Hidden Disability, and Systemic Harm
https://a.co/d/00XJxTPs
Diane Gould, LCSW, Executive Director and Founder of PDA North America, writes:
“I just finished A Body of Evidence: Disbelief, Hidden Disability, and Systemic Harm, by S. M. Korhonen, and was blown away. Her story so mirrored my experience working in multiple special education programs as a school social worker and my experience advocating for complex neurodivergent learners around the country. It was written in such a clear and powerful way. S. M. articulated thoughts and feelings that I had no words for. I caught myself holding my breath multiple times while reading, just like I often do in school meetings. She outlines the patterns, practices, and beliefs that hinder schools’ success in educating PDA and other students through her personal story. Because of that, the book reads like a novel, and I had a hard time putting it down. Although this was not the intent, there is so much to learn from the book for parents, educators, and others who care about children and families. The book is hopeful because it includes what is possible when people understand and build trust. The reader comes away wondering why it needs to be so hard. I would love to see this book read by all education majors at every college and university in America.”
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