Ch 18: Getting Help · disability planning

The Life-Changing Art of…Labelling??

During a conversation with a new friend, I mentioned that my child participates in  an autism-specific resource. Since autism is often invisible, my acquaintance was shocked to learn my son had a disability at all. But he was upset only that my son’s experience had been “labelled.”

I noted I was super happy that it had. The “label” had brought so much understanding to our experiences, as well as connected us with amazing resources!

Interestingly, the very same friend had had no qualms about giving himself a label (“empath”) only moments before. Like many people, he was uncomfortable not with descriptors, actually, but with descriptors he deemed negative. That is, many of us are okay with the labels of male, female, short, tall, African, Lebanese, student, contractor, empath, extrovert, diabetic, or doctor. And yet, a person entirely comfortable with any of these may balk vigorously at terms such as autism, schizophrenia, introvert, shy, neuroatypical. Why? Are some of these negative? Or are they in fact neutral?

As a writer, I’m clearly addicted to words. I love them, and think they’re important. I believe they are powerful, have weight and impact. For example, in my opinion the term “needy” to describe a person whose income is low is awful. (We are all in need of something, whether that be touch, food, company, or information. I feel strongly that expressing one’s humanity should not result in an “us vs them” attempt at separation.)

However, I do also see value in the shorthand of language, when done accurately and mindfully. I don’t know about you, but I don’t want to have to say “four-legged surface on which food might be placed at meal times.” I want to say “table” or “kitchen table.” I like this label, this shorthand. And this is all appropriate language is: short hand, nothing more, nothing less.

We (thankfully) don’t say “a child who chatters at unusual lengths, has trouble recognizing faces, misses common social cues, and has difficulty nagivating the visual-spatial fields such that he may get stuck inside a tree trunk or struggle to copy material from a blackboard to paper.” (Can you imagine??) We say “nonverbal learning disability.” It’s faster, in the exact same way “table” is faster than “four legged surface on which food might be placed at meal times.” It also serves as a directional arrow for a caregiver who wishes to be of more benefit to the struggling child and to a family ready to locate helpful resources.

Obviously, we don’t reduce a person to any one descriptor, however accurate it may be. A person thrilled to see himself on the Myers-Briggs scale as an ESTP may be healthy or unhealthy, evolved or unevolved, depressed or joyful. Any label gives us only a small window into a person. But when accurate, it gives us a window nonetheless, and that window can prove to be a real blessing. It can help a person accept himself, heal shame, express his needs in a healthy way, understand how he is different from the person he loves and the person he has conflict with, broaden his styles of communication, challenge himself, see from more than his own perspective, and begin to accept the nature of others.

I’m a happy, healthy, hardworking, organized, female INFJ with autism. None of these points of shorthand hurt me. Several of them connect me with resources. The day I got my first real diagnosis, my world opened up. Suddenly, I could easily find: others I could relate to, classes to help me heal, alternative therapies that had worked for others, a sense of orientation and understanding, awareness of what aspects of myself to challenge, and appreciation for what aspects to make a little more room for.

When I say, “My son is diagnosed with autism,” I understand that not every person I’m speaking with will know what autism is and is not. Because I’m aware of the very limited knowledge a lot of people have about autism, I mention it only where relevant. For example, I’m explaining how it is that he’s at a specialized school. Or I’m creating a tiny space in which the person might have a touch more patience or compassion with my son when he injects a conversation about gardening with details of a planet’s speed of travel.

At the same time, I’m aware that when I use shorthand, I’m going to bump into some pretty crazy ideas. I’ll be told my son “doesn’t seem stupid” (that’s not what autism means), or that he doesn’t have autism (despite five physicians diagnosing him as such), or that he will wither and die if not bullied into the mainstream (um?).

While accurate, neutral descriptors aren’t an issue, prejudices are. If I attach my own ignorance, misconceptions, outdated learning, or fear to a given label, I’m going to create problems where none need to exist. If I equate “gay” with “promiscuous”, for example, or “man” with “jerk”, or “autism” with “stupid”, my prejudice is what’s creating a problem.

But the label? That’s just convenient short-hand, like the rest of language is—and getting on board with it can be life-changing.

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