Ownership of the Mind: How Neurodiversity Is Taking Charge of Labels for Deeper Understanding, Part 1
Within the chapter head Neurodevelopmental Disorders, of the psychiatric (sort of) consensus manual on mental illness, there are seeds of thinking differently. Not to discount the importance of the other F codes in the same chapter, but my main concern and experience relates to ADHD, Autism Spectrum, Academically Gifted, and some of the otherwise unnamed struggling with what we may call “typical” development. Milestones for typical development are well-reasoned and important for the most general well-being checkups. Still, there is a murmuring from the neurodiverse who have been diagnosed with disorders as defined in the DSM-5-TR. The ADHD, ASD, GT, IDK among us (including me) are starting to create their own labels and sets of letters, and this may be worth widespread attention.
Intuit with me a moment…without going into deep research to prove how social media has transformed the practice and understanding of mental health for better and worse (outreach, community, conversation, desire to learn, getting folks into therapy…but also concept creep, misrepresenting credentials, misinformation, confirmation bias ), let’s consider that…it has transformed practice and understanding. For better and for worse, we are changing how we know ourselves and others.
Connectivity has created more places to project ourselves toward identity, and it has also created a map of connections that leads us to self-knowledge. Self-knowledge includes things we learn about ourselves from others, especially those who are willing to bring gentleness, patience, and love in their teaching and avoid the need to control at great cost.
Neurodiverse children are more likely to exact that cost from parents and other adults who humanly struggle in any of the myriad ways that humans struggle. As kids we were more likely to get the “speed up, slow down, get up, calm down, be quiet, talk right now, stay here, go away, that’s not how” from more people and more often. It is what it is. Knowing how to love and be loved helps a lot.
If prevalence rates for neurodevelopmental disorders are accurate, somewhere between 85% and 99% of the population dictates the criteria for neurodiversity by their scientific rigors and/or by NOT being diagnosed like the 1% to 15% of those with neurodevelopmental disorders. It feels odd when described that way. It is similar to the way I like to say, “If the optimistic side of research indicates that 1% of the human population are born with psychopathy, then that means 99% of the human population have the innate capacity to be decent human beings.”
Each set of percentages describes a population in some way, but the standard medical model of psychiatry and managed care diagnosis coding for reimbursement has always controlled the labels even though more than a century of research and practice still has not produced a single definitive biomarker for any of these labels. It now makes sense that the labeled are deciding to take charge of labels and educate the labeling experts with more nuanced labels of their own. Lived experience produces its own expertise.
The neurodiversity community that has grown over recent years has taken over labeling with the help of compassionate researchers, therapists and loved ones by creating new acronyms. PDA, RSD, BP/RBP are becoming a part of the common language. For me they are describing “stuck places” where neurodiverse individuals “find themselves” imposed with a task they don’t remember choosing. This includes managing the emotions of being fussed at and punished for confusing reasons that may take a little time to process before fully understanding. Getting unstuck and hopefully remembering not to get stuck in the first place requires gentle space and patience from others. It is what it is. Again, love is essential.
Over the next series of articles, I explain my own journey from diagnosis to discovering and creating operational terms while digging into the experiences of Bedtime Procrastination, Pathological Demand Avoidance, Rejection Sensitivity Dysphoria, and lesser known others.
These are not diagnoses. They are experiences best described by the experiencers and those who exude the patience and willingness to listen to them.
Next Up: Part 2- Bedtime Procrastination or Revenge Bedtime Procrastination (BP/RBP)
