3 Things Every Parent Should Know About Diagnostic Labels

We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.

– Abraham Lincoln

When a professional evaluates your child and offers a diagnosis, it might provide some relief. Finally, your concerns and suspicions are validated — and you know what to call it. But are labels powerful or problematic?

Over the years, I’ve talked with many parents about what they wish they had known about diagnostic labels. Here are the top 3 tips:

  1. Psychiatric Labels Are Not Like a Throat Culture

Ever wonder how diagnostic labels were created – or how they are determined? Sixty years ago, the American Psychiatric Association developed a system to help clinicians across mental health fields make consistent diagnoses. The system provides diagnostic criteria for mental disorders by organizing clusters of symptoms that tend to occur together into categories. All this is presented in a kind of psychiatric bible called the Diagnostic and Statistical Manual of Mental Disorders or “DSM” (the current version is “DSM 5”, the fifth edition).

Sounds official, right? But this pathology-based system can be deceiving, because labels don’t correspond with known, measurable biological processes. Unlike diabetes, for example, which can be diagnosed by measuring insulin levels, mental “disorders” are determined by what amounts to a symptom checklist. Although the DSM provides standardized guidelines, there is still room for subjective interpretation. A child may have symptoms from more than one category, but a clinician will determine which category (or categories) fits best.

Since diagnosing is as much an art as it is a science, it’s crucial to find a qualified practitioner whom you trust.

  1. Use with Care: Labels Give Us Shorthand, But They Don’t Describe an Individual

Labels come with their own baggage, stigma, and misunderstanding. Diagnoses are a shorthand way of characterizing a mental condition, giving parents, teachers, and clinicians some idea of what to expect. But labels should be used with care. Keep in mind, everyone has different interpretations and experiences related to these terms. There’s a saying that “if you’ve met one child with autism, you’ve met one child with autism.” This holds true for any diagnosis. Two children might have the same label, but seem to have little in common. Using a label to describe a child can leave more misunderstanding than not. As you have no doubt figured out already, every child is different.

Sometimes, labels can cause people to lose sight of the whole person. By looking at individual strengths, talents, and interests – in addition to offering ways around the difficulties – we can separate the child from the diagnosis. Many (but not all) parents follow the rule of “person first”. For example: There is a big difference between saying he or she is a/n “(diagnostic label) kid”, and saying he or she is a “kid who is affected by / living with (diagnostic label)”.

Dangerous?

Diagnostic labels can create a set of limiting expectations, not only for the adults who are trying to help, but for the child as well. When we lead with a label, we’re telling our kids “you have a disability, a disorder, a deficit”, which sends messages that can be internalized as “you are broken…you have less potential than others…you will be trouble…here’s your excuse for not trying.” None of these messages are constructive.

Dr. Ned Hallowell, who is well known in the realm of learning and attentional issues, eloquently highlights the damaging effects this labeling system can have. (Note: I’ve crossed out his references to specific issues, so you can superimpose your own kind of complicated.) Hallowell says:

“Using our pathology-based model, when we diagnose and treat these kids we often, inadvertently, instill the most dangerous learning disabilities. By far, the most dangerous learning disabilities, what truly holds people back in life, are not ADD or dyslexia. The dangerous disabilities are fear, shame, loss of hope, broken confidence, shattered dreams, and a feeling of being less-than. Those are the disablers. Without meaning to, teachers, parents, doctors, and other professionals instill these disablers every day–in the name of helping children.”

The good news is that you don’t have to rely on labels to help professionals, friends, or family members provide effective support. How about saying “This is a kid who enjoys doing ____, is good at ____, and is really interested in ___, but has some challenges related to (difficulty) that makes it harder for him / her when it comes to ___.” BIG difference!

Why bother with diagnostic labels then, if they can be so damaging? Two reasons: special education and insurance. A diagnosis is required for a child to qualify for certain special education services, and a diagnostic code is required for insurance coverage. What’s important to remember is that the system may be a necessary evil, but you don’t need to allow a diagnostic label to become the paradigm that defines your child and his or her place in the world.

  1. Labels Can Be Fluid

As children grow and evolve, sometimes they shed or collect new labels. Over time, it could be that a different diagnosis is more descriptive. Or, it could be that the practitioner was looking for what they know best. Sometimes specialists tend to see what they’re looking for. Whatever the case, it’s not uncommon for a child’s label to change. It can be frustrating when you go down a rabbit hole, trying to learn everything you can about “x”, and then you learn that actually “y” is what you need to know about. At least now you know that labels aren’t necessarily set in stone.

Kids who are complicated may be facing a whole range of issues, some scarier than others, but let’s face it — everyone has something. (As one friend said “The DSM is a good read. You’ll find so many aspects of yourself in it!”) A label doesn’t have to define your life, or your child’s self-concept. It’s not a sentence. Don’t underestimate the ability of the human mind to adapt and overcome. Getting an accurate diagnosis is a useful step towards understanding your child’s mind. It can help you and your child gain insight into strengths that can be tapped and vulnerabilities to be supported. Sure, there are thorns, but there are also rosebuds to cultivate.

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