Faith Rhyne and Rylin Mariel
What follows is Faith’s response to Rylin’s letter as seen in part I. -Aki
I was telling a friend the other night,
“You know, if I had been born 20 years later, I’d have been diagnosed with Aspergers. I’m sure of it.”
I wished I had been diagnosed with Aspergers. Instead, I got diagnosed with depression and bipolar disorder, and was treated as such. I’d have been much better off had I gotten an Aspergers diagnosis. My family, who I think really were trying to do the right thing, would have made sure that the strengths associated with Aspergers were identified and nurtured. I would have been “quirky.”
They would have told me I was special.They did tell me I was special. However, they also told me I was that there was something “wrong” about my “chemicals” and they did not tell me that I was as smart as I eventually figured out that I am.
Sometimes what we are not told is just as crucial as what we are told.
However, I know all too well that we, as a species in general, think within the limits of our informational and conceptual parameters. Thus, if one has a primary identity that is based on partial information, or if the symbols of that identity, such as labels, supplant the individual self as the source from which personal understanding is derived, one may end up with a skewed or altogether inaccurate perception of who they are.
As someone who lived for years with a clumsy and painful understanding of myself in relation to the world, I certainly understand that more information leads to greater and more positive self-affirmation. My life changed when I began to understand how my brain worked and how that related to EVERYTHING. I love my brain now that I’ve gotten to know it a little better. In 23 years of being seen and evaluated nobody told me a damn thing about how my brain worked. Really. I had to actively seek that information and piece it together for myself. I’m not finished learning and I’ve gotten some things wrong and other things tremendously right. So it goes…so it goes…
It seems to me that if one’s understanding of self is constrained by diagnostic criteria, rather than expanded in a positive and strength’s based way, the person can, in fact become changed in who they think of themselves as being within the context of a modern world with modern words and modern pills.
I think that it is frightening, actually, that SO MANY KIDS are diagnosed with autistic spectrum and attention/hyperactivity “disorders.” The diagnosis alone puts them at risk for being medicated with some very dangerous drugs and treated in such a way that they may fail to develop strengths of self that may otherwise be developed.
That concerns me. I suppose it may be radical to think that perhaps we’d all be better off if we were to scrap all the old diagnostic language and come up with some new words for our modes of experience.
I think neurodivergent is a brilliant term, as it indicates difference, but does not suggest that difference is necessarily bad - which is the subtext of the language of the Diagnostic and Statistical Manual, a book that is not known for being at all strengths based.
Additionally, in using the term neurodivergent, I have found that people then inquire about the nature of the word, “What is neurodivergent?” Then I get to talk to them about what my understanding is, and if I include parts of my experience or story, I can do so in a way that is more self-directed and assertive than allowing for whatever associations between the words “Asperger’s” or “Bipolar” may occur in the murky minds of limited information.
Labels are words and they have meaning, but the meaning isn’t always accurate and often it is harmful. Some words get cluttered with poor information, some words don’t do their job. Some words are, at this point - given what we know, full of malfeasance. Still, these words tell us who we are and we act in accordance with them or in defiance of them, always dancing with external definition, sometimes deeply oppressed by the words that have been laid down and all the meaning that they carry.
Struggle exists. It is a human condition and we all have it in our own way. I understand why people having insight into what we may need could be helpful, but not at the expense of those who may be harmed by an institution of external definition in damaging and diminishing terms. There are ways to navigate many challenges and somehow people seem to find a way to a niche as soon as given a chance. I think there has been a lot of shift in dialogue about the whole notion that the myriad human experience can be captured in criteria such as those put forth by the DSM. It is for this reason that, while I’m glad that the Labels work for some. It is a shame that they harm so many and that is difficult to reconcile.
To me, we’re all just Mad. Neurodivergent. Whatever. We are who we are and we are who we say we are, depending on to whom it is said and in what context. Thus, I just try my best to be honest. I’ve had to learn a lot of emotion regulation and communication skills. My archives of “Social Situations and how to behave” has exhausted itself and so I usually just do what I feel like might be appropriate, by watching other people and following suit. Often, what they are doing makes no sense or I don’t like doing it and so I then, again, just do whatever I feel like doing and I try to be intentional in doing it, considering all things.
Yes, it all gets very complicated, doesn’t it?
When we give things names, we stake our claim and we assign our world meaning of our own creation…and often this meaning tells us absolutely nothing about what we have named, only that we have named it.