I’ve been meaning to write a post about this since I started this blog. I have so much to say that I let myself get distracted to the point of saying nothing. I couldn’t decide how to frame it, contain it and get it all across. Today I have decided just to start and let it spill onto the page.
There seems to be some confusion amongst some people we come into contact with during our journey. Mainly professionals or workers on the periphery, to be honest, rather than anyone intensely associated with our journey, but there is this faction of people who think a diagnosis is a ‘label’. *add negative connotation and sarcastic tone of voice for dramatic effect!
These are some of my thoughts about this.
What is so wrong with labels? We are all labelled and categorised throughout life.
Some examples that I am or have been labelled with are; First and most obviously my name but also; Mother, daughter, wife, sister, chef, writer, blogger, carer, painter, reader, foodie, friend, crohn’s patient, driver, shopper, customer, consumer, swimmer, ‘A’ grade student, winner, loser, runner up, interviewer, interviewee, applicant… you get my gist.
What these labels all have in common is they are descriptions of me. Not necessarily me in my entirety but in the context of the use of the ‘label’ the relevant part of me in that moment. None of them devalue any of the others. I remain all of me which ever description you use.
So when it comes to a diagnosis of Autism why do some people suddenly assume it’s a bad thing?
As Carly Jones so eloquently stated “A diagnosis is an absolute privilege…to have the correct label is amazing. All these differences are not deficits”.
A diagnosis is a privilege – one regularly hears people reporting relief at finally having an answer to something after a period of ‘not knowing’, whether it is medical, mental, emotional or academic. The certainty of a name, a definite – a label, is unquantifiable.
The lack of a diagnosis, or label, gives rise to such confusion and uncertainty that the impact on mental health is well documented. One could argue therefore that a label or diagnosis isn’t just a privilege but a necessity.
The correct label empowers someone to accurately describe themselves. It gives them a ‘club’ to belong to and answers the basic human need to ‘belong’. It gives them [part of] their identity. Self-Identity is critical to self-acceptance and mental well-being.
It also gives validation to their experiences. Acknowledging what they have described and their account of their life. It illustrates that they are seen, heard and believed. It is validating and it is accepting of their true self. It is empowering.
It provides useful shorthand to describe something to others. It acts as an access key to supports and assistance.
It also prevents the opportunity for mislabelling.
Have you ever been wrongly labelled? The injustice and extreme frustration of being falsely labelled can have devastating consequences. Imagine being given the wrong medicine because of the wrong medical diagnosis. Imagine being falsely accused of something you haven’t done or even falsely imprisoned.
I wonder if the people who think labels aren’t important have never been mislabelled? Maybe you only feel the power of a label when you have been mislabelled or remain unlabelled. In other words lacking the one you need, the one you deserve, the right one.
I will always fight for a diagnosis for my girls. Whether they are diagnosed or not, they are who they are. Their autism doesn’t disappear just because a doctor hasn’t called it that yet. I believe getting a diagnosis is acknowledging their true identity and giving their experience a name. In diagnosing, or as some would say, ‘labelling’ them, I am showing them how much I love them for who they are. That is the key for their future, their self-acceptance and ultimately their self-worth.