Healing vs Harm: The Two-Sided Coin of Labels

If you’ve been following this blog for awhile, you know how I feel about labels. I’ve blogged about them a few times already:

I Don’t Want to Label Them

Anything But Autism

The tl;dr version of the above posts is this: a proper medical “label” (ie. diagnosis) can be life changing in a good way. A proper label can open doors to help and better understanding. A proper label can even improve a person’s mental health, and mitigate their suicide risk. Knowing that you are neurodivergent, and not “a failure” can literally save your life.

There is always two sides to every coin, though. Which is something a commenter pointed out over the holidays.

Here is the full text in case the image is hard to read:

Commenter:
“However, any negative behavior seems to be labeled autistic these days. It’s getting old online. People are associating only behaviors that are negative with autism. Some people think because they have a family member that is autistic that makes them an expert. I think it’s better that people refrain from labeling. If the person is not tested and have the diagnosis it puts negative ideas in the parents minds about what autism is. Schools are having difficulty getting parents to agree to testing partially because of this.”

My Reply:
“I understand your perspective and frustration. It sounds like you have personal experience with this, perhaps affecting a Loved One. I am so sorry.

I started to type a reply to you about the misuse of labels, and it got really really long. This is something I am very passionate about too!

Unfortunately, it got so long it exceeded character limits! So, I think I am going to blog about this topic in the New Year. Please look for it after the holidays.

Thank you for your excellent point, person’s name. It is definitely ‘the other side of the coin’ that needs to be addressed.”

It’s true. A label in the wrong person’s hands can hurt more than it helps. Unfortunately, this has been true for longer than I have been alive. Below is a longer version of the reply I began to write to the commenter above. I hope both they, and you, find it helpful as you navigate the giant issue of labels.

How Labels Get Misused

It is a tale as old as time that the public co-opts a medical term and misuses it. They usually do it for one of two reasons:

1. As an expression of hyperbole, because we humans seem to love being dramatic.
   “OMG, you just gave me a heart attack!”
2. As a malicious insult, because we humans seem to like nothing more than putting others down to make ourselves feel good.
   “Retard.” “Sped.” “Skitso.“

The word “idiot” is a perfect example of this. Did you know that “idiot” used to be the correct medical term for someone with an intellectual delay? But people abused it, and used it so viciously that medicine decided to rebrand. One of the new terms they used was “retarded” …we all know how that went. There is currently a movement calling to rename Schizophrenia for the same reason. Many believe that the word now carries a stigma too big to overcome. It won’t surprise me if Autism gets a rebrand in a generation or two for similar reasons.

People are often nasty and cruel. They insult and persecute anyone who is different, because they perceive different as a threat. I wish this was not true, but it is. I wish I had the answer, but I won’t even pretend that I can solve a centuries-old problem. All I know with certainty, is the power of proper diagnosis based on my own lived experience.

My Experience with Misued Labels

For many years, one of my biggest annoyances was the misuse of labels, particularly mental health ones. As someone who struggles with their mental health to the point of suicidal ideation, I had very little tolerance for people who, I believed, were cheapening the meaning of mental health terms, making it harder for those who were truly struggling to get help.

I noticed–and I called out–anyone who said “depressed” when they meant “sad,” or “OCD” when they meant “particular,” or “Bipolar” when they meant “moody.” I was quick to hit “reply” on social media, and correct this error, because I was convinced that the public’s misuse of mental health words was the main reason that people who were truly struggling weren’t believed, and couldn’t get help.

However, after years and years of fighting with the healthcare system, I have come to realize that the problem is so much bigger than someone’s flippant comment online. The problem has a lot more to do with systemic issues, the lack of mental health professionals, and the lack of up-to-date quality training. Battling one person at a time on social media wasn’t going to fix any of that.

You know what is starting to fix that? (Albeit, slowly?) The general public’s interest in mental health, and their collective outcry for better education and services.

Yes, when mental health language entered the mainstream vocabulary, many people misused the terms. People are still misusing and abusing the terms. But you know what else has happened? The people who needed those words to understand themselves also learned about them. Those people became armed with the language that they needed to advocate for themselves at the Doctor’s office. Those people are the same ones putting pressure on policy-makers and advocating for change for the next generation.

My Experience with Properly Used Labels

Before my first child was diagnosed with Autism, I was told over and over again that he was everything from “a handful,” to “a little shit.” I was told that he was “disobedient,” “undisciplined,” and that I needed to “get a handle on him,” and to “break him before he breaks you.” While I always knew deep inside of myself that there was something going on that no one could see, it didn’t stop those words from sinking in. I chose to stand between others and my kid, and absorb their words as his shield, but in doing so, I internalized so many hurtful words about myself. “Permissive,” “bad mom,” “incapable,” “weak,” “foolish,” and “making a big mistake with that one.”

One word: Autism, evaporated them all.

The label of Autism took my son from “little shit,” to “handling this remarkably well considering his severe sensory issues.” One word took him from “disobedient,” to “it takes longer for him to respond because of his delayed language processing, but you can tell he’s really trying.”

The label of Autism took me from “bad mom,” to “Good catch, Mom. You have really good instincts,” nearly overnight.

Labels changed everything for the better a second time, and then a third, when both my husband and our second child received their proper labels that fit.

And finally, labels revolutionized my life completely when, at the age of 38, I finally received some official diagnoses of my own. Suddenly, I was armed with the truth: that I hadn’t been “weird,” “stupid,” “slow,” “socially awkward,” or “too smart for my own good” all those years. Nor was I “inconsistent,” “too sensitive,” “overly emotional,” or “someone who cares too much.” My diagnosis labels absolved me. Labels saved me at a time when I was about to break. I wish that for everyone.

The words Autism, ADHD, RSD, PDA, SPD, ARFID, PTSD, C-PTSD, Neurodivergent, and others, are precious words in my household. The right people using the right words saved us from the unkind words of others, and the unkind words we had begun to label ourselves.

The Two-Sided Coin of Labels

Right now, language about neurodivergent brains is entering the mainstream vocabulary, just like mental health words did a couple decades ago. And just like the mental health terminology, certain people are misusing and weaponizing it.

Some people are misusing the words by armchair-diagnosing people, simply because it makes them feel smart or powerful.

Some people are saying ignorant and insulting things with the new, novel words they have learned. They are labeling anyone “hyper” as “so ADHD,” and tossing out insults like, “What, are you Autistic or something?”

Ignorant and cruel people can always be counted on to do ignorant and cruel things.

Does this abuse of language make me angry? Absolutely it does. It makes me especially angry when I hear about families who don’t want their child labeled because they believe the misinformation that their auntie has posted on Facebook, or because they heard an insult slung at work. It angers me, saddens me, and hurts my heart when I see this happening.

But do you know what else I see happening? Slowly, the people who need these words to understand themselves are hearing about them. They are arming themselves with the language that they need to advocate for themselves at the Doctor’s office. And, even though it has only been a short amount of time, I already see some of these same people advocating for change, and fighting for a better world for the next generation. I am doing my best to be one of them.

My Coin Has Landed

I hate that I have to take so much abuse and crap alongside the good benefits every time the public learns a new buzzword. I have been at the forefront of it twice now. But do you know what I would hate more? My kids growing up the way I did. Different, and not knowing why. Struggling, and not knowing how to get help. For them, I will take all the abuse and crap in the world.

The simple fact is, I can’t change people. If a person is determined to stay willfully ignorant or abusive, nothing I can say or do will change their mind.

I can choose to let this fact make me timid. I can hide away, not share my children’s or my own diagnosis with anyone, and suffer in silence, hoping nobody notices us.

I can choose to let this fact make me bitter. I can hate the whole world, and become a vicious keyboard warrior that spews venom every time I get hurt.

Or, I can stay the course. I can be who I am in the open, and gently and kindly educate anyone who will let me. I can answer questions from the curious, and help mold their perspective. I can use my story to help others. I can use my story to call professionals to account. I can use my story to clear a path for those who come after me.

A few months ago, a woman from an older generation told me a story. She was at a Bible study when someone started to say some ignorant things about depression. About how it was caused by a bad attitude, and how it could be cured by a better attitude. “Ashley, I heard your voice in my head,” she told me. “I knew better, because I’ve listened to you, so I said something! I told him, ‘That might be true for a mild emotional depression, but it’s not true for clinical depression. It’s a real medical condition that needs medical help.'” I was so thankful for the reminder that my words matter, and that they have a ripple effect.

I already see a stark difference in how mental health issues are addressed today, verses when I was young. I know that there are still problems to be fixed and biases to overcome, but seeing teens today talk about their struggles without half the shame and stigma that I did makes me feel proud. I stood up and spoke up when everyone–even family and friends–wanted to push me down and shut me up. I choose to believe that the horrible battering that I (and so many others like me) took for so many years, has blazed a trail for those that follow us. I wear my scars proudly.

Here I am once again. I’m using labels that scare people. I am identifying myself, even though I know very well that I am making myself a target when I do so. I am strapping on my armor, walking into the fray again, and gaining new battle scars. I’m doing it for the people who come after me, and this time “the people who come after me” aren’t just hypothetical–they have names, they have faces, they are my own children–I am more determined than ever.

This middle-aged, mentally-ill, neurodivergent mama still has a few rounds left in her.

In Conclusion

As I draw this abnormally long post to a close, there is something I need to make very clear: I’m not judging you.

If you have been hurt in this cultural label battle and need to step down, keep quiet, and heal, I support you. If you have been hurt so badly that you cannot speak up ever again, I will speak for you.

If you have been hurt by labels and need to lash out, rage, and type angry comments on social media, I understand you. Just because I choose to use my pain differently, doesn’t mean that I don’t feel for you. I know the depths of rejection, trauma, and anger you are drowning in, and wish you comfort and peace.

Owning a label is hard, sometimes painful, and sometimes terrifying. It’s not all victory and empowerment, no matter how much certain people say otherwise. Two things can be true at once. If your feelings about labels are complicated, that is ok!

If I can ask one thing of you, it would be this: please don’t attack someone for having a different experience, perspective, or approach than you. We’re all making this up as we go along. We are at the forefront of something new, and that is very hard. The entire subject of labels is complicated, and no single person has all of the answers.

©Ashley Lilley – First time commenting? Please read my Comment Policy.