Beyond the Label

My son has a DSM-5 diagnosis of autism spectrum disorder level 1. It’s a label of sorts that helps us have access to the supports he needs as he navigates through life and figures out his place in the world. You probably wouldn’t know just by looking at him that he lives with ASD. It’s a label, but it does not define him.

Truth be told, we “knew” years before a professional wielding the DSM-5 told us that our son was on the spectrum. But we also knew he’d fall into the “high functioning” end of the spectrum and weren’t convinced a label would help him anymore than we could help him ourselves. We also knew we did not want to have him carry around a label that some people would not be able to see beyond.

When we finally did hear a doctor use the phrase “ASD level 1”, it was followed by the caveat that he didn’t quite meet enough diagnostic criteria. Our son can usually access the “social skills” often lacking for those with ASD, but only because I spent the first 5 years of his life teaching them (they did not come naturally for him) and the following years reminding him how to access those skills when they were needed. I was trying to help him learn how to move through his world without carrying a label.

All through preschool and well into elementary school, he was mostly seen as an intelligent kid who was a little sensitive and quirky. It worked for him. It worked for us. Until it didn’t.

At the beginning of 3rd grade, it stopped working. Suddenly the kid who had always been just a little sensitive and quirky, became angry and increasingly anxious. Seemingly overnight we found ourselves not knowing how to help our son navigate through life. This was when we went looking for professional advice, help, answers – we were looking for a label, because for the first time ever it seemed like a label was the only way forward.

And so it was between the ages of 9 and 10, my son picked up a series of labels. The official DSM-5 labels are ASD level 1 with co-occurring mixed expressive/receptive language disorder and anxiety disorder. The stigma filled societal labels (the ones we so desperately wanted to avoid) are “high functioning autism” and “mentally ill”.

Life is funny. I spent the first 9 years of my son’s life attempting to keep him from being labeled. Then I spent a year actively trying to find a label. Once we had the labels, I embraced them for what they can be – not a definition of who he is, but a key to helping us understand him, help him, and parent him in the ways that are best for him. Those labels also gave him some insight and words to help him understand himself and why he experiences the world the way he does. Labels often carry stigma, but I’ve come to know that they can also hold potentially life changing knowledge and access to resources.

We don’t often use the word autism in our house.  It’s a part of my son, but it’s not what defines him (anymore than his anxiety disorder or depression define him). Today he is 13 and on the downhill side of 7th grade. He’s still incredibly intelligent, slightly sensitive and quirky. He’s also observant, insightful, empathetic and funny. He’s fiercely loyal to the people he loves. He’s a lover of musical theater and writes code for computer games from scratch. He’s physically awkward in the way that rapidly growing 13 year olds are all physically awkward. He’s finding his way in the world just like every other 13-year-old on the planet – he just happens to have to do that while also living with ASD and mental disorders.

He has some labels, but those labels do not define him.

What I know to be true is that my son wants to be fully and genuinely seen and accepted for who he is – and ASD is a piece of what makes him whole. So for him, and for every other child and adult on the spectrum (and for the people who love them) I ask you all to do me a favor – look beyond the label and see the person.

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