Why Getting a Diagnosis Matters

Over the years as a speaker and advocate, I often have people say to me – oh I know my child is (insert condition) but I don’t see the point of getting a diagnosis. Or – I know I have (insert condition) so I don’t need a diagnosis.

Each time I hear this it takes all my effort to keep my internal voice from screaming at them – having a diagnosis matters!!

In the age of Dr. Google, we have a wealth of information at our fingertips. While it’s great to be able to educate yourself on a condition, it’s important to remember you are not a medical professional (and even if you are, you need an unbiased opinion).

There are oh so many reasons why having a diagnosis matters.

Getting clarity

Here’s the thing. Many conditions do not exist in isolation. For example, an autistic individual may also have ADHD or anxiety, common co-morbidities of autism. However, it’s important not to assume just because a person is autistic that they have these conditions.

By not working with a medical professional, you will likely not know the extent of your diagnoses. Or you may assume you have one condition, when it’s actually a completely different condition.

I know this seems obvious to many of you, but I’m amazed at how many people self-diagnosis themselves, or worse yet, their kids.

Empowering kids

If you’re a caregiver or parent, I strongly encourage you to not make assumptions about your kids. Another thing I hear is – my nephew has ADHD and my son acts nothing like him so I know he doesn’t have ADHD.  

Just as every child is unique, so is how a medical condition presents in them.

I have two kids who have been diagnosed with ADHD. That’s the extent of the similarities between them. Each child has different stretches, strengths, triggers, tools and resources they rely upon.

My daughter went undiagnosed for years as she presented completely different from her brother. This is often the case with females as too often we look at symptoms common in males as there’s still a limited understanding of how females present.  

I’m a huge believer in empowering kids to learn about their diagnoses so they can figure out what supports, tools and strategies work for them.

Knowledge is power

Here’s the thing. If we thought a loved one was diabetic, we’d want them to be diagnosed. Why? Because they’d be able to understand what was happening in their body and how to manage their condition.

For some reason people don’t apply this same logic to invisible disabilities. Since knowledge is power without having a clear understanding of your diagnoses, you’re limited in your power.

I’ve also met parents who’ve had their child diagnosed with ADHD or autism and haven’t told their child. Another gobsmacking moment. Their reason – I don’t want them to feel labelled.  

Too often what happens is the child knows there’s something unique about them. They may wonder why they have trouble concentrating, reading social cues or navigating friendships. By not telling the child their diagnosis, and helping them learn more, you’re limiting your child’s self-awareness.

The other challenge with not getting diagnosed – you limit the ability of others to support you or your child.

In the education system, having a learning disability or neurological diagnosis opens up accommodations and supports that are meant to help the student. No diagnosis, no supports.  

Forging connections

Finally, having a diagnosis opens doors to accessing a community. For me, this has been a huge help.

I spend a lot of time online researching conditions, reaching out to my online community with questions and answering questions from other parents/caregivers.

There are so many incredible resources just a click away.  

Once you have clarity on your, or your loved ones, diagnosis you can advocate for their needs, connect them with resources, and learn how best to support them.

The next time someone tells me, oh I know my child or I have XX, so I don’t need a diagnosis, I will politely give them the link to this blog, keeping my internal voices to myself. I encourage you to do the same.