A Few Thoughts on Labels

Close-up on a notebook, with a pencil to the side. There's an alarm clock and a cup of pencils above it.
There's a lot of controversy around labels. Some people love them, some hate them. I'm somewhere in the middle. 

They’re not all good or all bad

I’ve heard the topic of labels coming up a lot lately, from autistic teens discussing self-identified labels versus labels others put on us, to a mom expressing feeling shamed by a fervent anti-labeler after seeking an autism diagnosis for her son. I hope no one feels ashamed of seeking or not seeking a label to meet their family’s unique circumstances.

Labels can be useful for some things—like getting services that require a diagnosis, or explaining behaviors to others without spending a paragraph talking—as long as they are not taken to an extreme. Doing without them completely requires a lot of extra explaining, and often the same explanations are repeated over and over to many different people, which sometimes can be beneficial and sometimes is just extra work. This is why I tend to take a middle ground approach.

My autism label

In my own experience, getting a label for something can be a self-revelation, an opportunity to re-evaluate my story, and to write a new one. When I got my autism diagnosis, I felt like I finally had explanations for a lot of the difficulties in my life. But I couldn’t chalk up everything to autism. My own personality and life experiences shaped me just as much. I am not defined solely by my autism, although it is an integral part of me. Knowing that helps me understand myself and my past better, and make better choices for my future.

Getting my autism diagnosis was also like getting a hug, joining a club, finding my tribe.

Getting my autism diagnosis was also like getting a hug, joining a club, finding my tribe. The label introduced me to a community of people with similar experiences who helped me feel normal for the first time in my life. There were others out there like me!

Sometimes getting a label isn’t so warm and cozy. Some people have a very different view of autism than I do, and that can influence how they treat me, and not always in positive or accurate ways.

For example, the official term for autism is Autism Spectrum Disorder. I do not agree that autism is inherently disordered. Yes, there are certain challenges, and some people deal with a lot more than I do, but the way my brain works is not disordered, it is different. But that term “disorder,” implies that I need to be fixed or cured or healed, but I am not sick.

The hardest thing

The hardest thing about being autistic has not been the autism itself.

The hardest thing about being autistic has not been the autism itself; it has been my sensory sensitivities and the social challenges. But once I got the autism label, I had a better idea of what to look for to help myself, and have used my awesome autistic brain that is great at researching and problem-solving and pattern seeking and deducing, to figure out many of my sensory and social issues. Now those are both getting so much better, and I am feeling so much better in myself, that I’m experiencing more of the benefits of autism with far fewer of the drawbacks.

Labels can be a useful shorthand in describing a range of common experiences, or they can become straight jackets when used to hold someone back (because they “obviously” can’t do that), to push someone beyond their limits (“people like you are good at that sort of thing”), or assume that you know what someone else’s experience has been simply because of the label.

Similarly to people, labels are good at some things, and not so good at others. They can be helpful when you treat them with care, but they shouldn’t be pushed to be something that they cannot be.

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Heather Cook

Hi, I’m Heather. I’m an Autistic writer, advocate, and life coach, and I'm building a life I love. I help other Autistics to build their own autism-positive life. I love reading, jigsaw puzzles, just about every -ology, and Star Trek!

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