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advocating autism diagnosisOne of the quieter moments in the much maligned Star Wars movie, The Phantom Menace, is the first conversation between Padme and Anakin. Listening to him talking about his past, she suddenly exclaims in shock, “You’re a slave?”, to which Anakin indignantly replies, “I’m a person and my name is Anakin”.

That understated moment highlights two very important things about labels.

  1. Firstly, that learning about someone’s label can drastically alter one’s perception of the individual – it shouldn’t happen but clearly it does.
  2. The second point is that those of us with labels often resent the baggage that comes with it and seek acceptance as an individual, not as a “sufferer of…” or “a victim of…“.

Of course, those concepts are hopefully far less relevant to the notion of slavery today, but they fit very neatly into today’s world of labelled children.

We all strive to exceed the limitations of our label and as we become older and more experienced, we get to know our own capabilities and limitations better than anyone else. Negotiating the label as an adult isn’t too hard, because we can control the exposure and the expectations – who knows about it and what they think it means.

Labels and Children
The labels problem becomes much more difficult when it’s up to other people to make decisions about our suitability for a task. This is usually a childhood issue.

People like parents, teachers, sports coaches, extra-curricular activities leaders and employers make decisions about our capabilities all the time. Sometimes these are based on past performance, for example keeping us out of a “tackle” football game based on our issues in previous tackle football games. Sometimes it’s conjecture; assuming that we won’t like soccer either, even though there is far less physical contact in that sport.

When I was in school, a sports teacher made some huge mistakes by judging my classmates on appearance. There were two boys in particular who were ignored as candidates for the football team; one because he was “fat” and the other because he was “short”.  This was in the eighties when teachers used to use those words in front of the entire class. He immediately put them in as “reserves”, a school word for “people we don’t give sporting chances to”.

When they finally did get a chance to play, these two boys proved to be the best of our year group. The big guy wasn’t much good at running in “tip” footy, but put him in a “tackle game” and he was virtually unstoppable. The short boy surprised everyone too with his signature move of diving between his opponents legs.

In my case, teachers saw that I had hearing aids and upon discovering I was deaf, they automatically assumed I was dumb (ie: mentally challenged). Despite being an A+ student and going to one of the best schools in my region, I would always start each year in “remedial” classes with the kids who were struggling. After 3-6 weeks, I’d be moved back into the advanced classes where I belonged, but then I’d have to catch up. Who knows how much three weeks per year hurt my long-term grades?

You can see how judgmental teachers can be when using appearance as a guideline, but labels are much worse.

Labels for Invisible Differences
Special needs kids are usually indistinguishable from their peers based on appearance, but many teachers use the label instead, forgetting that there is always an individual behind the label.

One of the major problems of using labels to describe invisible conditions is that people automatically assume the worst. The words “attention deficit” automatically mean “can’t pay attention” to most teachers, while “hyperactive” translates as “swings from the ceiling”. Autism too conjures up the worst of Hollywood’s imaginings on the subject.

Of course, we can’t simply get rid of those labels because we need them for funding and support, and as many adults on the spectrum will tell you, the label helps them to understand and accept themselves.

The labels have to stay but they don’t have to define us.

This is why it’s our job as parents and advocates to constantly promote the individual above the label and to teach our kids to rise up against the limitations that others put on them.

Some Ways to Promote the Individual

  • We all read things on the Internet that we don’t agree with, but sadly most of us simply pass by those sites without commenting. If you find a site on which someone says something that is clearly wrong, for example, that people with autism do not have emotions, then comment (nicely) and let them know that this is not the case. There’s no need to pick fights, but there is a need to ensure that your voice is heard.
  • The same goes for teachers in IEP meetings. Never ever allow the word “autistics” to be used as a general phrase. Make sure that they’re talking about your child by name. Remind them, if need be, that your child is an individual and that “when you’ve met one child on the spectrum, you’ve met ONE child on the spectrum“.
  • Finally, when the time comes to discuss the label with your child, make sure that you’re clear that the label is just an easy way of describing things. Point out children with blonde hair, for example, and say that the label is like saying they’re blonde. It doesn’t say everything about them… in fact, it doesn’t even say everything about their hair, doesn’t account for different styles or shades – or the fact that hair can be dyed.

One day your child will become their own advocate and when that day comes, they need to remember to spread the word that they are so much more than just a label. It eases description, but it doesn’t define them.