Why It Is Important to See Labels As a Tool, Not a Destiny

A label paves the way to understanding

Years ago, when my husband and I were first trying to piece together the different aspects of our daughter’s developmental delays and emotional problems, a friend recommended we seek an assessment from my area’s Early Intervention department. We filled out the paperwork and scheduled the assessment, but in the back of our minds was a worry.

We both had grown up in a time when learning disabilities were poorly understood and kids who had them were usually educated in the LD classroom with the other “dumb” kids. The label of a learning disability was a stigma, a sentence to live out the rest of one’s years separated from the “normal” kids.

Mental health issues were even more difficult for teachers to wrap their heads around. The closest we really ever got was to acknowledging the effect of a child’s mental health on her school performance was the broad diagnosis of “Behavioral Disorder.” And, likewise, those kids would go into the BD classroom with the BD teacher so they didn’t disrupt the learning of the “normal” kids.

And that was if your issue was ever detected, diagnosed, and treated. Many kids with learning disabilities were never diagnosed, and they were left to their own devices in a general education classroom, where they would flail and fall behind. Kids like me with emotional disorders that didn’t get in the way of other kids’ learning were never even really addressed, aside from the odd visit to see the guidance counselor.

We didn’t want our daughter to end up with a label that would determine her destiny. But we couldn’t sit around and watch her struggle, either.

We needed help. We needed answers. And if a label helped us get those things, then that’s what we needed to find.

Over the years, with assessment after assessment, many different labels have made their way into our vernacular. Childhood Apraxia of Speech. Speech articulation disorder. Cognitive delay. Developmental delay. ADHD. Social pragmatic delay. Nonverbal learning disorder. Anxiety. Depression.

The names have been confusing, scary, and disheartening at times. But I can honestly say that, while the relentless search for a name to describe my daughter’s many idiosyncrasies was exhausting, I wouldn’t trade the results for anything.

A label can help you find identity and community

When I started to suspect my daughter had Childhood Apraxia of Speech, the first thing I did was to join an online community for parents whose kids also had it. I suddenly had a place to ask questions, to find a practitioner who could evaluate and work with her, and to commiserate with the fact that parenting a child who can’t communicate her needs is hard.

Before then, I had nowhere to go with my questions — nowhere, that is, unless I wanted to wait in an eight-month-long queue to see a developmental pediatrician. Questions, at that age, cannot wait eight months. By then, my initial question would be resolved and dozens of others would have taken its place.

Each time we have refined her diagnosis, I’ve been fortunate to find online or in-person groups for parents like me and our children. I get to hear from people who identify with the learning or mental health issues my daughter has, and with parents who identify with my own struggle to help her navigate the acronym soup that surrounds her.

When my daughter gets older, she will be able to join these groups, as well. She’ll be able to talk with others who share the same mental health issues and who are taking the same classes in school. She’ll find community in a way she never would be able to if she didn’t have a label to synthesize her struggles.

In fact, time after time I’ve seen recently-diagnosed adults in these groups — with anything from ADHD to bipolar disorder — express feeling seen for the first time. There is a certain comfort in looking down a list of symptoms, ticking them off in your head, and finally knowing you’re not alone.

A label helps you understand and advocate for what you need

My daughter has made a significant amount of progress since her diagnosis of ADHD, Nonverbal Learning Disorder, anxiety and depression two years ago. Still, each time we see her developmental pediatrician, he issues the same words of caution.

“We know,” he’ll say, “that students with this profile often begin to struggle when things begin to get more abstract,” and, “Make sure to keep an eye on her friendships because she’s very susceptible to bullying.” He knows these things, and we as parents now know them, because there is a framework that outlines the characteristics of the average person with her diagnoses. Without a label, it would be much more difficult to identify the suite of needs out daughter has and the specific interventions that can be put in place to support her.

No one will ever identify with every single characteristic of each label she carries. But being able to look at our daughter’s needs through those lenses has been immensely helpful when trying to communicate with her school, her outside therapists, and other support providers. For example, we can tell the school we don’t want to pull back on in-person math support just because she’s memorized her times tables, because we know longer multiplication problems will likely cause her to get lost and frustrated, and we can be sure the teachers are keeping an eye on her on the playground to be sure her friendships are staying positive.

Equally, she can get to know her own characteristics as a learner and as a friend, and as she gets more confident she can advocate for her own needs — both at school and in relationships.

Your label is a description, not your destiny

While having a label to describe yourself can open up access to a world of information and support, it’s important not to over-identify with these labels. It can be easy to develop a fixed mindset and think, for example, “Well, my disorder says I’m bad at this, so I might as well not even try.” Things may be slow going. Things might not come as easily to you as they do to other people. But you are capable of learning and growing, even in your disability area.

One way we help our daughter to avoid this tendency is to frame her disability and mental health issues not in terms of a label, but instead in terms of her strengths and struggles.

She knows that some parts math can be hard for her, but that she really nails some other parts and has learned a ton in the last few years, even in her weaker areas. She knows it’s hard to keep friends, but she has been able to practice sticking up for herself. She knows she has anxiety, but she also has strategies to lessen those feelings.

She is still young, and we won’t be able to avoid sharing her specific labels with her forever. Hopefully, though, by showing her how possible it is to work to bolster her weaknesses while embracing her strengths, we are paving the way to her being able to separate herself from her disability when she gets older.

A statement I heard in a special education training ages ago comes to mind as I think about my daughter and her various struggles. The trainer said, “Put the person before the disability.” We can develop more empathy when we begin seeing people as people first, rather than their differences being their primary defining characteristic. My daughter isn’t “an ADHD kid.” She’s a child — a beautiful, empathetic, sweet, bright child — with ADHD.

Similarly, how individuals think about themselves can change when they think of themselves as individuals first, before applying that disability or mental health label. Your diagnoses are only a part of who you are. It may feel like they run your life a lot of the time, but they can only do that if you let them.

A label says nothing about who you are destined to be. Rather, a label should be used as a tool — one which can help you learn about yourself and what you need, so you can grow into the best version of yourself you can be.

Invisible illnesses are so difficult to manage, in part because it’s hard for others to understand what they can’t see. It can be even more difficult to understand the debilitating effects of trauma on the developing brain, because “trauma” is not a diagnosis. Yet it still manifests itself for a lifetime, a double-invisible influence, informing the beliefs we hold about ourselves and the world and guiding our behavior, especially in times of struggle. For, me everything started with childhood trauma.

Join me here every second and fourth Monday, where I explore the invisible influence of past trauma on current beliefs and behavior. Find all my past columns and subscribe for updates here.