In this blog post, Patricia S. Lemer explains what the term nosology means and why diagnostic labels might not be helpful or useful.
Nosology and Diagnoses
What is nosology? According to Webster, it’s the systematic classification of diseases. I first heard the term from Sid Baker at the 1999 DAN! Conference. He drew a tree, using the latest PowerPoint technology, to demonstrate the absurdity of this concept by applying it to his socks. He has blue, brown, black, grey and white socks; summer and winter socks, dress, casual and sports socks. And orphan socks, waiting for the dryer to spit back their mates.
Sid neatly placed each category on a separate branch. Unlike trees, for which a single leaf identifies its class, socks fit multiple categories: color, season and use. So do disorders like ADHD, autism, language delays, Sensory Processing Disorder and learning disabilities.
I recently met a webmaster who still has autism labeled as an “emotional disturbance” on his site. I suggested that he move it to “biological disorders.” “You mean it’s genetic?” he asked. “Maybe,” I said. “But, there are clear metabolic, nutritional and immunological markers.” “No kidding!” he responded.
Medigenesis, Developmental Delay Resources’s first .com sponsor, grew from the idea that children’s disorders, like most ailments Baker saw in his medical practice, have no single cause, and that they thus cannot neatly be placed on a single tree branch.
Baker found support in the medical literature for the idea that diseases are not things. Trees and socks are things. Autism, ADHD and learning disabilities are notions – concepts that one group of people (psychiatrists) have formed about another (children). I agree with Baker that we get into deep trouble when we confuse things and notions.
Baker notes that ADHD in three different people can have different underlying causes. One’s hyperactivity may be a result of school over-placement, another’s by metabolic problems and a third’s by food sensitivities. Unless you know the cause, how do you know whether to have the child repeat first grade, take zinc supplements or avoid dairy products?
Winnie the Pooh’s Diagnoses
I enjoyed an article in Canadian Medical Association Journal from 2000. In “Pathology in the Hundred Acre Wood,” Canadian researchers diagnosed a range of clinical, personality and psycho-social disorders among the characters of “Winnie the Pooh.”
Yes, Christopher Robin, Piglet, Eeyore, Owl, and the Bear of little brain were all labeled using the infamous DSM-IV. And each was prescribed medication. Eeyore has clinical depression and needs fluoxetine, poor Owl has dyslexia, and Pooh carries the burden of co-morbid (or dual) diagnoses: ADHD (the inattentive type) and OCD. He clearly needs a low dose of stimulant medication and psychotherapy! Reader’s reactions ranged from uncontrollable laughter to outrage.
Do We Need Diagnoses?
Some may be reading this and saying, “But you must have a diagnosis to know where to turn.” There are some good reasons for obtaining a traditional diagnosis. If a child is determined to have an autism spectrum disorder, that diagnosis leads one to books, websites and specialists.
But, as the sponsor article points out, that diagnosis can also lead to extreme confusion about which treatments could work for that individual. If one buys the spectrum concept, a dual diagnosis makes no sense because a more severe problem assumes less severe ones. Pressure from those who have invested their time and money in a specific method or treatment is inevitable.
Another reason for a one-word diagnosis is statistical. Without the diagnosis – autism – how else would we be certain that we are in the midst of an epidemic? How else could school systems plan for special education needs of the future?
The best reason, though, is to remove blame and guilt from the family. When a child I know screamed all night at a Disneyland hotel, the patrons didn’t care or understand, but the manager might show some empathy when told the child has autism.
People Are Not Their Diagnoses
It’s time to recognize that sick people are not their diagnoses. They are human beings with thoughts, feelings and a cluster of symptoms. We now speak of a child with autism, not an autistic child.
Like the author of an anonymous letter to the Autism Research Institute newsletter, I too “long for the day when the DSM is no longer of any value…. and that instead, doctors will run a series of tests to determine what caused the body and brain to malfunction, and then know what medical interventions to use, based on that individual’s needs.”
Nosology is a term for the Dark Ages. Let’s put it in the depths of our drawers with our orphan socks. I encourage you to empower yourself with this brilliant approach to a new beginning in medicine.
About Patricia S. Lemer LPC MEd
Patricia S. Lemer is a licensed professional counselor, holding a Masters of Education in counseling and learning disabilities from Boston College and a Masters in Business from Johns Hopkins University. She practiced as an educational diagnostician for over 40 years.
She was a co-founder and served as Executive Director of the international non-profit organization Developmental Delay Resources (DDR). After DDR merged with Epidemic Answers, she became Chairman of the Board. When she retired from the board, she became an emeritus board member.
She is the author of three books, the most recent of which is Outsmarting Autism, Updated and Expanded: Build Healthy Foundations for Communication, Socialization, and Behavior at All Ages (North Atlantic Books, 2019).
Lemer wrote over 50 editorials for "New Developments," the quarterly newsletter of Developmental Delay Resources (DDR), from 1995 - 2009. When DDR wound down, she wrote an online blog, "After the Diagnosis, Then What?" from 2009-2017. Her articles and blogs have been updated and archived on the Epidemic Answers website.
Since 2019, Patricia Lemer has recorded a bimonthly podcast, "The Autism Detective." In these hour-long shows, she interviews parents and professionals about their experiences in maximizing the potential of individuals on the autism spectrum. Over 100 episodes are available on Spotify and other online platforms. To learn more, go to PatriciaLemer.com and OutsmartingAutism.com
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Sources & References
Shea, S.E., et al. Pathology in the Hundred Acre Wood: a neurodevelopmental perspective on A.A. Milne. CMAJ. 2000 Dec 12; 163(12): 1557–1559.
