Life on the Spectrum

What’s in a label?

Over the years that I’ve been dealing with Asperger’s, I have met some people who say that they do not want to have a “label”, or they do not want their child to have a “label.” They believe that labels are bad things and should be avoided.

Of course, there are some situations in which a person has to have a diagnosis and has to reveal that they have the label of Asperger’s/autism. These are situations in which a person might need accommodations at work or school, or they need to access certain services. But what about social situations? What about telling your co-workers? What if you have made a new friend and you’re hesitant about telling them?

Well, what is the purpose of a label? A label tells you what’s inside the package. Say you go to a store because you want to buy a TV. But when you get to the store, all you see are boxes — boxes with no labels. They’re all the same size and shape. How do you know which box contains TVs, which contain radios, which contain other furniture? You don’t, unless the boxes are labelled.

It’s the same with Asperger’s. While some of us are seen as “quirky” or “eccentric,” most people can’t tell just from outward appearance that someone has Asperger’s. Unlike the more severe forms of autism, it’s usually not obvious. So you don’t know what’s in the box without the label.

I choose to wear the Asperger label. I may not tell a person the moment I meet them that I have Asperger’s, but if I know I am going to be spending very much time with this person, then I probably will tell them — I’ll use the label — because I want them to know what’s inside. I want them to know that if I’m not making eye contact, it’s not because I’m being dishonest or evasive. If I accidentally say something that could be considered rude or insensitive, I’m not doing it intentionally. If I tell them I wish to avoid a place that is extremely busy and noisy, I want them to know why.

“But Purple Aspie,” some people have said to me, “if I tell people that I am autistic/have Asperger’s, then they will have preconceived notions of what autistic is, and they will treat me differently. They will treat me as disabled. They will not see me; they will see my label.”

This is where a person has to decide for themselves whether they wish to reveal their label or not, and when to reveal it. My suggestion is that unless you need specific accommodations for your autism/Asperger’s in a particular situation, you wait a little while to reveal it. Let people get to know you first. Then, when you tell them, they will already know you, and they will (I hope) know how to treat you. But you have to be willing to speak up for yourself. I know it’s hard; one Aspie told me that he is much better at advocating for other people than he is at doing it for himself. But you are the one who knows what you need; you are the one who knows how you wish to be treated. Sometimes you may just have to say, “I’m the same person I was before you read what was on the label.”

In the end, it’s up to each individual person whether or not he or she accepts the label or tells other people about it. I think labels have purpose, but we have to be careful how we use them. I’m reminded of the time my boyfriend got a brand-new label maker and went around sticking labels on everything in the house, including the cats. We should not be treating people that way, going around sticking labels on everyone willy-nilly. We should use labels where they are appropriate and useful, to help us understand what’s inside.

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