Mother and son lay in bed and smile at each other


Not Everyone Needs to Know About My Kid’s Diagnosis

Oct 7, 2019

Your child just received a diagnosis. It could be autism, it could be ADHD, or it could be something else entirely.

Receiving that diagnosis is a great first step to ensuring your child gets the support and accommodations they need, but many parents wonder who they should or shouldn’t tell about their child's diagnosis.

Should they tell their families and friends, or should the child's friends know?

Here's Another POV From Dyan: Why I'm Thankful For My Son's Autism Diagnosis

These are just some of the questions a parent might wonder.

Just start the conversation. That's often the hardest part.

Now, obviously every family is unique, and all that jazz, so the decision who to share your child's diagnosis with is going to be different for everyone. Same goes for when you do it, too. However, I strongly believe that there are some people who should be aware of your child's diagnosis in order to help your little one get the best support possible.

I'm not saying you need to slap up a Facebook status and announce it to the world. Goodness, no.

But there are a few people in your child's life that should know about the diagnosis.

First and foremost, you need to share the diagnosis with your kids — they have the right to know. They are hands-down the most important person to share the diagnosis with. Giving them the vocabulary and teaching them about their diagnosis is so empowering. It gives them a greater understanding of who they are and what makes them unique. It also avoids years of confusion where they might wonder why they're different from their peers.

More Recommended Reading: 8 Things I Want Parents Of Newly Diagnosed Autistic Kids To Know

There are many parents who might be hesitant to share the diagnosis with their child, fearing things like stigma or worrying that they might not understand what the diagnosis means. However, there are lots of age-appropriate ways to share a diagnosis. For instance, you can read books, you can talk openly about differences, you can watch TV shows with characters who have the same diagnosis, and so on.

Just start the conversation. That's often the hardest part.

Now what about family members or close friends? Should you tell them too?

I do think everyone in the immediate family should be told. Yes, that includes your child's siblings.

This is up to you and your child to discuss because, honestly, some family members might react to a diagnosis in different, or unexpected ways. Some might react negatively, or dismissive, not believing your child fits that diagnosis, while others might be positive and uplifting. The reactions will be all over the place — trust me.

However, I do think everyone in the immediate family should be told. Yes, that includes your child's siblings.

But again, disclosing the diagnosis could be completely on a need-to-know basis when it comes to family and friends. Only you and your child will know who to tell and who not to tell. And, depending on your kid's age, you should make that decision together.

It's also important to share their diagnosis with their teacher and school, especially if you want your child to be successful in that environment. Sharing the diagnosis allows the school to put specific accommodations and supports in place for them. And your child's diagnosis will be kept confidential. Or at least, it should be.

But what about coaches, music teachers, or that new swim instructor they have?

Well, they might need to know too, but use your own discretion here. If knowing the diagnosis means your child gets more accurate help and instruction, then it's certainly worth disclosing.

Be Sure To Read8 Things You Should Never Assume About Autism

Finally, it's important to share with relevant medical professionals. Obviously, your child's diagnosis will be kept confidential, but it's important for these professionals to know about their diagnosis in order to provide the right kind of care.

So to recap, tell your child, tell your child's teacher and school, and tell the medical professionals responsible for your child's care. But use your discretion when it comes to friends and family members because sometimes the answer to the question "who should I share my child's diagnosis with?" isn't always clear-cut.

One thing I like to do is ask myself a series of questions when trying to decide whether or not to disclose a diagnosis to a particular person. For example:

  1. Will my child be interacting with this person on a regular basis?
  2. Will withholding the diagnosis negatively impact my child in any way?
  3. Will my child be properly supported without disclosure? Or would they be better supported if I disclosed?
  4. Does my child need specific support in order to be successful with this person or in this environment?
  5. Does my child agree to share their diagnosis with this person?
  6. Am I familiar with how this person views disabilities? Are their views positive or negative?

Depending on the answers to these questions, I can usually figure out whether or not to share my child's diagnosis with someone. And like I mentioned before, the list of people you share with is going to be different for each and every person, except for the three main people who do need to know: your child, your child's school, and the medical professionals involved in your child's care.

Article Author Dyan Robson
Dyan Robson

Read more from Dyan here.

Married to her high school sweetheart, Dyan is mom to two boys, J and K, who also teaches piano out of her home. On her blog And Next Comes L, Dyan shares her story of raising a child with hyperlexia, hypernumeracy and autism, amongst a variety of sensory activities for kids. You can find out more about their story on Facebook, Pinterest, Twitter, Instagram and Google+.


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