Many parents are scared of “labels.” So scared, they don’t pursue a diagnosis for their child because of the fear their child will forever be defined by their diagnosis.
I understand this fear. I once shared it too.
There is a reason we did not initially share our daughter’s Asperger’s diagnosis with her, or with too many people around us. We were scared she would be defined by her diagnosis – forever limited by her label. In fact, I once wrote the following:
I am trying to remain positive and focus on what we can do next to help her, but I am worried about “the label.” With our son, the label that came with the autism diagnosis was welcome; it helped us obtain funding and assistance for him that he needed. He clearly has special needs and I have never hidden them from his teachers, friends or family.
My daughter is different. She doesn’t appear to have any special needs, and while a label might help the school obtain extra aide time, a label can also imply certain expectations of function and behavior. I don’t want her to be judged by the fact she has Asperger’s – I want her to be judged on what she can do as an intelligent, funny, affectionate, unique little girl.
She may be known by a different label today, but to me she is still my little girl from yesterday – and I will always love her, just as she is.
I wrote these words nearly exactly 5 years ago. I’m not sure when my thinking changed. But it did. Slowly and irrevocably.
I think a lot of the change came when I fully accepted the diagnosis myself. For a long time I unconsciously thought the diagnosis, and the label that came with it, was indicative that something was wrong with my child. I never said this aloud, and I never even consciously gave it a lot of thought at the time, but looking back, I can see that was my headspace in the early days.
Now I see the spectrum as a wonderful place of clever thinking, innovative ideas, boundless creativity and unique perspectives. There is nothing wrong in any of that. It is just a different way of thinking and viewing the world.
Yes, there are challenges with an autism diagnosis – I live with them every day. However, now I’ve come to accept my children for who they are, the challenges are less daunting. I realize the challenges are tied innately to the way they interact in the world around them, and I can usually do something to help them.
I’ve since come to realize that a diagnosis, and the label that comes with it, should not be viewed in a negative way at all. Instead of defining someone and their abilities, I believe a label actually enables and empowers.
A label provides access to help, support and assistance. Without a diagnosis, people cannot receive funding to help meet the costs of care. They cannot apply for assistance at school. They cannot receive benefits they are rightfully entitled to. A label allows them to access the help and support they need.
A label is the key to understanding and acceptance. A diagnosis and a label can provide answers and promise help. As I’ve described above, the label, even though I feared it, allowed me to fully accept my children’s conditions and understand them better. We have a far better relationship now there is a label to explain their needs and requirements.
A label is a sign of action, representing the first step in moving forward. Seeking a diagnosis and a label is a proactive step, recognizing there are unique difficulties and making a move to address them. Once the diagnosis and label are accepted, it is far easier to move on emotionally and make real progress – believe me.
A label allows people to find their tribe and their community. A diagnosis helps families congregate – to find others in a similar situation. There are support groups, in real life as well as online, which can only be accessed with a diagnosis. A label provides entry to these groups and also represents a common link, bond and connection.
A label can help people take ownership of their condition. Many people come to accept their diagnosis and feel a sense of pride in their label. My kids are proud to be on the spectrum. They relish “being different.” For them, it’s a source of pride and it’s helped develop their self-esteem and self-respect. They know they are different and they are OK with that.
In the end, a label is just a word. A way to categorize similar things. Yes, words are powerful. They can cut, wound and stab just as deep as any weapon. However, words can also be owned. They can be claimed. They can be reformed and remade.
We all have the power to reclaim the meaning of the word “label.” We can change the negative connotations associated with it. We can recognize it for what it is – an enabler.
We can all do our part to change the way labels are seen in the future. We owe it to our kids, our families and our communities to tackle the word head on and not let it stare us down.
We shouldn’t live in fear or avoid a diagnosis and the label that may come with it. We should be doing everything we can to identify our kids’ needs and doing everything possible to address them. Because how can we help them if we don’t know how?
That’s why I truly believe labels don’t define. They enable.