Monday, August 26, 2013

Why a label is important to me...

Erik's (and my - she was mine first, but Erik sees her more than I do these days) psychologist asked me the other day why a label for Erik was important to me. It wasn't an accusing question, just one I needed to reflect on.

She is keen to emphasise that we do not need to label Erik as having Aspergers.

He is fourteen and at this tender age, he is keen not to stand out from his peers. He is afraid he will be 'dropped' by his friends if they think he is different - even though he has always been different, just not with a label attached to his difference.

I see his point and I understand why the psychologist is keen not to use the label.

It is quite common to hear people, particularly parents, referring to labels as a negative phenomenon. Labels categorise people and well, they are always imperfect because no two people are the same and categories, by their very nature, tend to want to make everyone within a category appear the same as everyone else within that category.

What I have noticed though is that most often the people who don't like labels are those who don't need them.

You see, having grown up with a disability - or for the politically sensitive, a set of special needs - I know what is to not have an accepted label.

In the same session where the psychologist was trying to convince me a label wasn't a necessity, she had to fill in a form on which she wanted to make special note of my vision impairment. So, she asked me, as so many have asked me before, 'What is the name of your condition.' And I answered, as I have before, 'It has no name, it is similar to De Morsier's Syndrome, but isn't De Morsier's Syndrome.'

'Oh.' she said, and wrote down 'legally blind'. Now legally blind is a label, but it isn't the correct label (even though I use it a lot myself) because it doesn't take into account my lack of a corpus collosum and how that impacts my short term memory or my under developed frontal lobe which affects my ability to control my impulses. Legally blind is a completely inadequate label, but in my case, no one ever got so far as to label my particular syndrome (of which there are at least 70 sufferers in Australia).

Okay, so not having a label makes filling out form tricky, so what?

Well, that's not the only downfall of not having an accepted label.

I've had many labels in my life; lazy, forgetful, disorganised, impulsive, rude, selfish, untrustworthy, careless, antisocial, weird - I could go on, but you get the picture.

Most of these labels refer - unwittingly - back to traits directly linked to my unnamed, unlabelled, condition. If I employ the label legally blind, some of these other labels disappear because people know better. If I also employ the label ADHD, most of the other labels disappear because people know better.

A child tantruming in a shopping mall because their sock is twisted in their shoe, is quickly labelled difficult, disruptive, annoying or spoiled. If, however, it is known the child has an Autism Spectrum Disorder, the behaviour is more readily accepted and dealt with much more compassionately and to the benefit of the child.

Erik is and will always be Erik. He is quirky and yet he has many friends - I'm quite envious of his plethora of friends. Trying to get the assistance he needs at school by telling his teachers, 'He just needs more time, you may have to repeat the instructions, you may need to break things down for him a bit more.'  will come across as precious and excuse making. However, if we go to the school and say, 'Erik has been diagnosed with Aspergers, he needs X, Y, Z.' They are far more likely to take us seriously and meet his special needs.

Without the label, he still has special needs, so he is a kid with special needs. His special needs fall into the category (the very broad and varying category) of ASD.

The label says, 'We're not making this up, we're not being precious or asking for a foot up, we're advocating for our child so he can have equal footing with his peers from the get go.'

That is why a label is important to me.

PS. Also, I won't let Erik buy into the bullcrap that a label makes him different or less than. The label does not change who he is, it is merely a shorthand tool for getting him what he needs.

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Good Job!