I spent this morning cleaning. Really cleaning. The scrubbing, dusting, mopping stuff that feels like a work out. 3 hours later, it is rather disheartening to look around and realize I could still tackle those dishes, put in more laundry, perhaps sort out the boys' rooms. The possibilities are depressingly endless. And so, I have made a pot of tea and quit the cleaning to blog about something I pondered while doing all that work that will be undone as soon as the boys arrive home at 3pm.
The subject that caught my attention is the meaning of medical diagnosis. Obviously this is rather pertinent to my life right now as I pursue genetic answers, and as a family we tackle a life-long approach to a significant medical diagnosis - autism. All my personal thoughts got focused this morning as I listened to a Radiolab podcast on the subject.
Side note here: If you enjoy science even a little tiny bit, I highly recommend Radiolab. Their podcasts are free to download, utterly fascinating, and you can access their archives going back years. A wonderful way to distract yourself from the task at hand, while learning the most incredible things about this world and life and the crazy things people are up to.
Anyway, this morning I listened to an episode of Radiolab titled Diagnosis recorded in 2008, in which they explore the entire topic, from the search for diagnosis to the impact. Interestingly enough, two of their cases felt very familiar to me - one dealing with cancer, the other, autism. This left me thinking about diagnosis in our lives. How has it changed our course? Why and how have we decided to know, because let's be clear here, a diagnosis is knowledge, it is not a disease itself. In other words, getting a diagnosis does not affect whether or not you have a disease only whether you KNOW you have it. How then, does that knowledge change you and your life?
In our life there have been clear cut examples of no-brainer, yes, tell me what's going on, give me the diagnosis. My breast cancer is one example. I had a lump. I needed to know what that lump meant. By learning it was cancer, I was able to pursue treatment. Diagnosis meant a chance at life.
But what of those instances where the decision to get that official knowledge is a bit muddied? What if it isn't a life or death issue, but something far more nuanced, such as autism? In the Radiolab episode, they featured a family in which one son has autism but does not discover it, or receive a diagnosis, until his 20s because his father refuses to see that there is anything amiss enough to seek outside help. Instead, the father pursued his own interventions for his son, mostly focused on enhancing his son's academic opportunities. As a result, the boy - who has Aspergers - excelled in school and attended college. Socially, however, the outcome was far different. Little attention was paid to helping him navigate the complexities of our highly social neurotypical world, and no explanation was ever offered to him as to why he struggled so much with what appeared effortless to everyone else. It was only with the intervention of his older brother that a diagnosis was sought, and behavioral therapies begun. Soon, he developed social skills, friendships, and even a romantic relationship! The diagnosis opened a door to treatments his father couldn't access alone.
The father, like most parents whose child is on the autism spectrum, lived in fear of the label, of potentially relegating their child to a special ed world in which they ARE their label. In fact, given where they lived at the time, it was admitted by a specialist, that the son likely would have been educationally tracked far below his ability.
Today, understanding of autism has grown and we know that an individual with the disorder is far more than their diagnosis, just as each of us are far more than any one descriptor can express. At least, that is the case for the well informed. A great deal of misunderstanding about autism still exists so that the diagnosis itself carries with it an enormous weight. Assumptions are made. Judgements passed. Labeling begins.
Peter and I struggled with the concept of labeling. While we wanted answers for Alec and the best possible treatments, we hesitated at stamping him with a diagnosis that in the hands of the wrong person could negatively shape his life.
When you receive a diagnosis, you are suddenly thrown into a world that is new and strange. There is fear of that unknown. While we understood that a diagnosis of autism opens doors to services to which Alec is entitled, we worried that the label of autism would slam shut doors of opportunities for our bright and inquisitive child. Would the outside world see only autism?
We chose at first to dance the line between diagnosis and label. Understanding that diagnosis can lead to labels, we protected the diagnosis. At our request, it was kept out of his primary medical file, not released to his preschool, and only given out with our express permission.
Slowly that dance has become more like a line in the sand. We are now very open with Alec's diagnosis of autism (as I sit here blogging about it for the world to see). It is written into his school record to unlock essential services. It is shared with family and friends so that they can join Team Alec and help him learn to navigate the world. But the moment the diagnosis is turned and twisted into the label that obscures who Alec is, the line is crossed. Diagnosis turned label equals harm as the individual is lost and who he is becomes assumed by the mention of the word autistic.
For us, diagnosis has meant knowledge, and the power to access help. But, at the same time, it has meant the need to protect the diagnosis itself from potential misuse. Once the diagnosis occurred, both sides have existed simultaneously. While we are constantly seeking more and more information on autism and how best to aid Alec's development, we also are on guard against those who would label him, and we tuck away information on autism that we can use to educate others on the disorder so that they can see the individuals and not the disorder.
So, there you have it. My thoughts this morning as I scrubbed the floors and toilets. Mixed in there, were many questions and ideas on my current genetic testing. It is a minefield of thought paths on the question of diagnosis. My brain is still so jumbled in the attempt to process it all, that the subject refused to be entered into this post. Perhaps another time.