How much of your child’s autism diagnosis you share with others—openly on social media or quietly on a need-to-know basis—is a decision autism parents face again and again, with no single right answer. Inspired by a client weighing whether to tell a work colleague more, this episode gives you a simple framework for deciding what disclosure is right for you.
This is a question every autism parent faces at some point:
- Do I explain my childs meltdowns or behaviors so others understand?
- Should I tell teachers, neighbors, or family members more to support safety?
- Can sharing help me feel less alone and more connected?
Lisa walks you through how to make thoughtful, grounded decisions about when to share and when to stay privatewithout guilt, second-guessing, or fear of judgment.
IN THIS EPISODE YOU’LL LEARN:
- Why parents land all over the map on disclosure, and why neither openness nor privacy is the “correct” choice.
- The principles Lisa uses for herself and shares with clients when deciding what to share and with whom.
- How to make the call from your own values rather than from pressure or guilt.
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RELATED EPISODES:
- How to Tell Your Child They Have Autism (Ep #40)
- When People Don’t Understand Your Autistic Child (Or You) (Ep #16)
TRANSCRIPT
You are listening to episode 178 of the Autism Mom Coach, sharing your Child’s diagnosis. How much of your child’s autism diagnosis do you share with other people? Are you an open book freely sharing on Facebook and Instagram, or do you keep the details of your child’s diagnosis close to the vest and share them with people on a need to know basis?
In this week’s episode, we are going to explore this question, and I am going to provide you with a simple framework you can use to make the decision that is right for you. Stay tuned. Welcome to the Autism Bomb Coach Podcast. I am your host, Lisa Candra. I am a lawyer, a life coach, and most importantly, I am the full-time single mother of a teenager with autism.
In this podcast, I am going to share with you the tools and strategies you need so you can fight like hell for your child without burning out. Let’s get to it. Hello everyone and welcome to this week’s episode of the podcast. I am so glad you are here and I hope you are doing. This week’s topic was inspired by a recent coaching call with a client who was contemplating whether to share additional information about her child’s diagnosis with a work colleague from coaching so many different autism moms over the last five years.
I know that parents are all over the map when it comes to this issue. Some parents share freely and openly. Are readily available to talk to anybody about their child’s autism diagnosis, and other parents are quite the opposite and keep the information very private on a need to know basis. There’s no right or wrong answer here, but since this is an issue that autism parents confront on a regular basis, I thought it would be a great podcast episode.
What I am going to do is share with you the principles that guide me in making. The decision for myself and that I share with my clients. First, let me give you some context about the coaching call. My client was asked by a work colleague if that work colleague could stay at her home where she lives with her son with autism for one day a week for four weeks.
My client felt torn. On the one hand, she really liked this work colleague and she loved the idea of staying up late, drinking some wine and chatting with her and connecting more. But on the other hand, she didn’t want her work colleague present in her home to bear witness to meltdowns. While she didn’t wanna give her a flat out, no, it’s not a good time.
She also didn’t wanna share the more intimate details of. Emotional dysregulation, meltdowns, stimming, et cetera. And one of the things that I told her is that as autism parents, we are under no obligation to share the details of our child’s diagnosis with other people. And she could say no in a friendly and respectful manner without sharing those details if she did not feel comfortable.
To me, this is really what it all boils down to. What are you comfortable sharing? And if you are not comfortable sharing, that is okay. You are not obligated to share anything about your child’s diagnosis. That said, in my experience, I do think that there is great utility in sharing your child’s diagnosis and details about their diagnosis, at least in certain context.
I view my child’s autism diagnosis and the manifestations of his autism as a medical diagnosis that manifest in ways that other people might not understand and may misinterpret. So sharing his medical diagnosis with the people around him, I feel is important for understanding him, for protecting him, and for advocating for him.
As it stands, there are so many people who do not understand autism, and by sharing information about our children, about their diagnosis, about the manifestations, about how they can be a supportive person in your child’s life. These are the ways that we educate other people about autism, but again, you are under no obligation to share your child’s.
Here are three guiding principles that I use when evaluating this question. First Clarity does providing information about my child’s diagnosis provide the people around him with information to help them understand or contextualize his behaviors. If my child is melting down during a birthday party because they got tagged out of dodgeball first.
Might it be helpful to share that information with the other parents so that they understand what is happening? Might it be helpful to share that information with the other parents so that they understand what’s happening rather than judging my child as a sore loser? Or maybe you have a child like mine who will just say things to people, say things that aren’t false, but aren’t necessarily kind.
For example, my child recently remarked about a family friend that he had aged since the last time my son had seen him, which. To most people, over 50 is not a compliment. Second, care. When I talk about care, I’m talking about safety. What do other people need to know about your child and their diagnosis in order to ensure safety, both for your child and for the other people who interact with your child?
This might mean sharing information about your child’s diagnosis with people you don’t really even know, but you’re doing it for safety purposes. I see this a lot with neighbors. Our children do things that people will either find peculiar, annoying, or even a violation. Uh, things like meltdowns on the front lawn, wandering into backyards, saying things that are really straightforward and direct to a neighbor.
These are the situations where you want to consider your child’s safety. Is it in service of their safety and the safety of the people with whom they interact? For these people to know about their autism diagnosis, to know what their triggers are, to know what their special interests are, to know what elopement looks like, to know what a meltdown looks like.
To me when it comes to safety, I am very proactive about sharing information and unfortunately, you don’t always get the reaction that you hope for. I recently spoke with a mom who shared information about her son’s diagnosis with a neighbor because her child was wandering into their backyard to catch butterflies, and the neighbor was pretty apoplectic about this.
Even when this neighbor was told about the autism diagnosis and the child’s special interest, they were not responsive to it at all. They just saw the behavior as poor parenting and left the parents feeling pretty crappy about sharing that intimate piece of information about their child to be dismissed in such a rude and ignorant way.
Although there may be people who are dismissive and not understanding, I think that’s the minority. The third factor I think about in sharing information is connection. Will sharing this information better? Connect me either with people I don’t know, or people I do know. For autism moms, this is so important because the autism parenting experience can feel very isolating, and the more we’re able to connect either with the people in our own lives who we want to have a deeper understanding of our child and our own challenges as parents, or perhaps really just strangers on the internet, who we want to share our experiences with because we know that they’re in a similar boat.
So those are the three things I think about when I’m thinking about what to share and who to share it with. You can borrow from this or you can create your own. The decision at the end of the day is yours. What feels comfortable and in alignment with your values. Alright, everyone, I hope that was helpful to you in thinking about how to think through sharing information about your child’s diagnosis.
