I met Lucy when she was seven years old. At the start of second grade, her reading skills were, to put it lightly, abysmal. Her parents told me that at curriculum night, Lucy’s teachers said the kids should begin reading chapter books. Lucy, meanwhile, was still struggling to get through early reader picture books that included anything more complicated than simple CVC words like cat and sun.
Lucy’s spelling was just as bad. Her writing was incomprehensible; the words were hardly phonological approximations of correct spellings, and there was no rhyme or reason to the letters she was using. Most of the time, she seemed to be guessing.
Lucy, for her part, was a shy, nervous child. She said she hated school. It was boring, she was stupid, and she couldn’t do what the other kids were able to do.
Unsurprisingly, when we conducted a neuropsychological evaluation, Lucy’s academic skills measured well below average. Her intellectual abilities were totally solid, though, and when I observed her in the classroom, it was clear she was receiving high-quality instruction, so I felt confident diagnosing her with a Specific Learning Disorder in Reading.
I explained to Lucy’s parents that she struggled with manipulating the sounds of language and linking those sounds to letter symbols, so dyslexia was an appropriate term to describe her disorder. Her parents were understandably upset; the word dyslexia seemed to imply that life would be extremely hard for their child. I tried to reassure them that the disorder was actually highly treatable, and that with the right interventions, Lucy would absolutely learn how to read.
I gave them a referral for a good Orton-Gillingham tutor named Dana, recommended some school supports and accommodations, and told them to bring Lucy back for a reassessment in three years unless something meaningful changed before then.
Sure enough, I didn’t hear from them again until Lucy was ten, when her parents dutifully brought her back for a reevaluation. Now a fifth grader, Lucy came into my office looking much more confident in her skills. She had developed a stronger self-concept, especially as a learner.
Lucy’s parents also reported that she had come a very long way. Sure, she still wasn’t among the top students in her class. She was resistant to doing her homework and never seemed to want to read for fun. But she could keep her head afloat, and her grades were solid.
Her parents attributed the improvement to effective interventions, and specifically to Dana, who they said was life-changing. About a year earlier, Dana had stopped the formal reading instruction she’d been doing, but she and Lucy had built such a nice relationship that Lucy wasn’t willing to let her go, so they shifted to informal homework help. Her parents called it glorified babysitting, but they were glad to keep Dana on the payroll so long as Lucy was happy and learning.
On formal testing, Lucy’s academic skills were just as her parents described: average. Her reading and writing skills measured around the 37th percentile. Not incredible, but definitely okay. Near the bottom of the average range, but still well within normal limits.
In my diagnostic formulation, I told Lucy’s parents that, since her reading skills were now at grade level, she no longer met criteria for a learning disorder. I removed the label from my evaluation and from her superbills. Her parents were surprised. They thought dyslexia was a forever thing.
I directed their attention to the diagnostic criteria in the DSM, which hinge on academic skills that are below average for grade level. Lucy’s skills weren’t below average anymore, so the diagnosis no longer fit.
It’s a common misconception that diagnostic labels are permanent descriptors. In reality, they describe how a person is functioning at a given moment in time. They are mere snapshots. Yes, neurodevelopmental disorders cause chronic impairment for many people, and no, those problems don’t disappear overnight. But people are always growing and developing and learning, and skills are responsive to intervention. So our diagnostic labels are appropriately fluid. Something that fits at one point in time may not fit at another.
This is exactly how we want it to be. A major purpose of diagnosis is to link a person to interventions, and, ideally, we want those interventions to work so well that the diagnostic label stops being relevant.
Lucy was a perfect example of this process in action. Reading may always be hard for her. It will probably always be a relatively slow, effortful process, and it’s conceivable she may never enjoy it. At the same time, the interventions taught her to read. She can do it. Her academic performance is at the expected level. She’s no longer disordered.
Let’s all keep this in mind when we talk about diagnoses. The last thing I want is for labels to be growth-limiting, and for people to think a label means there’s a ceiling on what they can accomplish. On the contrary, a label should provide a roadmap for meaningful support, intervention, and growth.
T-minus one week until AYF!
New Yorkers, I’d love to see you at the book launch!