How I Navigate Sharing the Hard Stuff on Social Media

 If you've ever shared something vulnerable about your non-speaking child on social media, or felt the pull to, this episode is for you. 

I recorded this for the Autism Changemakers Podcast because I saw a post recently from a mom I respect deeply. She shared an honest, graceful moment after an intense day with her son. It was beautiful. And it also made something rise up in me that I knew I had to talk about, because there's more here than most parents realize. 

What you share online about your child today can shape how people treat them tomorrow. Schools look at your social media. Districts look at your social media. People in your community, sometimes quietly, sometimes anonymously, are forming opinions based on what they see. And they're only seeing a glimpse. 

In this episode I talk about: 

• The one question I always ask myself before posting anything about Rocco, and why it has nothing to do with shame.
• Why even tasteful, face-protected posts about hard moments can put your child's long-term opportunities at risk in ways parents don't always see coming.
• How inclusion decisions are made, and what professionals who've worked inside school districts have told me about what happens when they see repeated posts about meltdowns.
• Why social media can feel like support, but often isn't the safe place parents actually need.
• Where parents of non-speaking autistic children can bring the real, complicated, scary stuff without worrying about screenshots, judgment, or their child's reputation.

Your child's story deserves to be told. And you deserve real support, not comment section support. Not likes and shares.
 
A private room full of people who already understand your life.
 
If this resonated, come find me, Sara Intonato, on Instagram @sara.intonato or learn more about Autism Changemakers at autismchangemakers.com.
 
Autism Changemakers is a private community just for parents of nonspeaking kids. It's where you don't have to explain yourself, and where you'll always be surrounded by people who believe in your child's brilliance. Come join us. autismchangemakers.com

Transcript

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Welcome to the Autism Changemakers podcast. I'm your host, Sarah Intonato, and I'm so excited to welcome you here today for an unfiltered, unedited conversation that's going to help you in your daily life. And when I say daily life, I truly mean it. Today's topic, which is focused on what I share online about my non-speaking son and what I don't and why, is going to address a topic that you probably face on a daily basis. How you can build connection and support yourself through the hard stuff, how you can be honest about the hard stuff without getting into territory that is sticky or even dangerous for your child. Let's dive in. There's so many more layers here than you expect. So thank you in advance for staying with me on this. Let's talk about it. Again, the topic of social media is ubiquitous in our culture. And for many parents like me who have felt isolated on their journey or still do while parenting an autistic non-speaker, social media has been a lifeline. It's been a place of connection for people who can't easily leave their homes. That's valid and it's beautiful. But it has also brought up a heavy layer of responsibility and a lot of unanswered questions. Many of them parents think about daily, but don't often ask out loud. For example, what do we share about our kids online? And what should we keep private? More specifically, what do we share online when our kids are having a hard time? Because if you're parenting a non-speaker or any child with significant support needs, this question is not theoretical. It's a question you rumble with daily. We've all had phases of hard times daily in our lives. I am not immune to that. This brings up a lot of emotion. And it can be tricky to navigate decision making when emotions are at play. But sometimes there has to be strategy involved as well. This episode today came to be because I recently saw a post from a mom I respect deeply. She shared a video of herself crying after her son had a very intense meltdown. It was a beautiful post. It was honest, it protected her child's dignity. It was done with taste and with grace. And I appreciated it so very much. But it also brought up something inside of me. And I realized there's more here that we need to talk about. Especially if you're the parent of a younger child. But even if you're not. Because what I've learned, fortunately or unfortunately, is that what you share online about your child today can shape how people treat them tomorrow. When Rocco was younger, I never shared his hardest moments publicly in real time. Never. And it wasn't because I was ashamed of him. It was because I was protecting him. Schools and districts look at your social media. Other parents in your community look at your social media. People in your town or neighboring towns look at your social media. Sometimes quietly, sometimes anonymously, sometimes under fake accounts, but they are looking. And whether they admit it or not, people form opinions about your child based on what they see. And they're only seeing a glimpse. They don't live in your home. They don't see your child 24 hours a day. They don't know the full picture. So it's only natural that they form opinions based on what they do see. So I always ask myself one question: Would this post help other people to presume competence? Or would it make that harder? Because once something is online, you don't control how it gets interpreted. You don't control who screenshots it. You don't control when it gets remembered. And you definitely don't control whether it's quietly shaping someone's expectations of your children. Here's something parents don't always realize when their children are younger. Inclusion decisions are not made in a vacuum. This is not my opinion. This has been told to me by professionals who I trust, who have worked with families of non-speakers for many, many years, who have worked in and out of school districts, and who I've developed close and trusting relationships with. These decisions happen quietly, usually behind closed doors, and they do affect your child's trajectory, short-term and long term. So part of my job as Rocco's parent was not just supporting him at home, it was protecting his long-term opportunities. That mattered more to me than sharing in real time for connection. Even though connection is beautiful, even though I deserve to experience it, even though support for me and for our whole family matters, even though belonging matters, trajectory matters too. There's another layer to this that parents of younger children deserve to hear. When you're parenting a small child who doesn't yet have reliable communication, it's very hard to imagine what their future might look like. If your child can't currently show academic knowledge, if they struggle with motor planning, if they can't yet access curriculum, if they're having frequent dysregulation or meltdowns, it is completely understandable to assume they may never need access to general education or even social and professional opportunities. But sometimes that assumption turns out not to be true. Sometimes, a few years later, that same child becomes an open speller. Sometimes that same child is capable of grade-level curriculum. Sometimes that same child grows into a teen who deserves a high school diploma, who's able to master their ability to regulate? And then suddenly it's a different conversation. Now the question becomes: can the school support them? Will they be allowed into inclusive environments? Will the adults around them presume competence? And here's the hard truth parents don't always realize in those early years. The reputation your child builds in systems often starts long before their communication catches up. So if schools or communities or teams have already formed an image of your child based on years of hearing about daily meltdowns, even completely understandable ones, that can quietly affect placement decisions later. Not because your child isn't capable, but because adults become cautious. They get scared when they're not confidently in control of their classroom or sports team or environment. And when your child was five years old, you couldn't possibly have known this was coming. You were doing your best, you were surviving the day. You were looking for connection and support. But this is exactly why I encourage parents to think about long-term trajectory when deciding what to share in real time. Because sometimes the child that we see at five years old is not the child that we meet at 15. There are absolutely things I share now online that I would not have shared in real time while they were happening. For example, I recently released a podcast episode about one of the hardest moments our family ever experienced. It was when Rocco had a parasite a few summers ago, and it affected everything about his way of being, including his sleep, including his behavior, everything. And during that time, two years ago, I shared very little about what was happening. This was intentional because he was about to start at a new school. Not only a new school, the only non-speaker in a high school of almost a thousand teens. And I knew it was not the right time for me to put that out there. Parents sometimes think vulnerability has to be immediate to be real. It doesn't. Sometimes the most responsible vulnerability is delayed vulnerability. Of course, I spoke with beloved friends and family I trust offline. Of course, I supported myself with coaching and therapy and my own wellness practices. I never hesitated in that. Beyond that, though, it was nobody's business. I often quote my relationship development intervention mentor, Ann Alfano. And from the time Rocco was really young, she would tell me, Sarah, anything that has to do with Rocco's medications or things that happen at home are nobody's business. Let them be your private business. You don't need to share them with school, with anyone, if their assistance is not needed. And she was right. I'll never forget once in passing, I mentioned to Rocco's team many years ago that he took a B12 supplement. And I did so because I got a call from the school one day that his mouth was red and they were concerned that maybe he'd been bleeding and they didn't know. And I said, Oh, thank you for bringing that up. But his B12 spray is red and it's the same color. So it's quite possibly that because he took it right before he went to school. That was it. Or so I thought. Until a few months later, Rocco had a difficult moment in school, and I was speaking about it with the school psychologist. And Rocco's anxiety came up. We were talking about how we managed it at home. We were asking the school to support him in a similar fashion. And the school psychologist said, Well, you know, maybe he's just taking too much B12. I said, Excuse me, you've never seen my child's lab work. You have no idea whether he methylates or not. You have no idea. Because you've never conferred with his doctors, nor will you, what his biology requires just to function on a daily basis. So it would be completely out of line for you to suggest, without that background information, that something he's taking because his body needs it is causing a problem here. That's something I can discuss with his doctor, and you will not be part of that appointment. It seems small, but anytime anyone can pass the buck and not need to be responsible, they will do it, especially if they're working in a setting where they're overworked and underpaid. Easier to just blame someone else, right? Easier just to look at the zillions of other variables that are happening with a student instead of the ones happening in school. So save yourself the time and energy, learn from my mistake. I never made that mistake again. And keep it to yourself. There's something else here that matters really, really deeply. Especially now that we're learning more from conversations happening around non-speakers' sensory awareness and perception. And it is that emotional expectancy is real. If you're in the spelling world, you probably know that term. If not, the term emotional expectancy has to do with the energy of the other adults or people in the room will impact that of the student or the speller. So of course, this is true as well in social settings and in academic settings. So you tell me what happens if a child enters a classroom where adults already expect them to struggle? Where adults doubt their ability to regulate or to make progress in that arena, where adults already assume a meltdown equals inability. Do you want to put your child in an environment where not only are people not presuming competence in the way that they could, but they're also filled with doubt and insecurity around their ability to support that student? Your child will feel that. Again, to quote my mentor, Ann Alfano, who had worked in schools for decades. She said to me, Sarah, there's one thing that dysregulates a child in school more than anything else I've ever seen. And it is when the child, the student, no matter how old they are, knows that the adult in the room is not confidently in charge. It scares them. A scared student is a dysregulated student. She said, I've seen it happen time and again and every time. That student can feel the adult is not in charge, and then they start to think, wait, what? I'm just a kid. I can't be in charge here. And that will lead to dysregulation. This is true in the home as well. If a child is driving the bus, so to speak, and in control of the home like a puppet master, and maybe for good reason, maybe the parent is afraid of the meltdown and they don't know how to handle it and they're not confident. The child knows that. And on a deeper level, it feels scary. So this type of emotional expectancy changes the environment. That changes the interactions because the expectations are now different. Interactions change access. Access changes outcomes. So, yes, our kids have every right to have hard moments. But I also believe it's our responsibility to protect the energetic environment they walk into every day. There's another reason I don't share hard things in real time on social media. And that's because social media is not regulating. Not for me, and honestly, not for most people. Research shows social media activates the dopamine reward pathways in the brain in ways similar to addictive behaviors, creating short bursts of gratification followed by emotional fatigue or even distress. Brainwave studies show increased cognitive stimulation and delayed recovery of calm neural states after social media engagement. So when something hard happens in my life, I go inward. I process offline, on my meditation cushion, on my yoga mat, in the weight room, out in nature, with a therapist and a coach and people who I trust to support me. I spend more time in silence with myself. I spend more time inside my family structure. We connect and reconnect with each other. Inside is my real support system. Because social media is a broadcasting platform, not a nervous system regulation tool. And I reserve the right to take as much time as I need to regulate myself offline before I turn forward facing and talk to you or anyone else about what I'm feeling and experiencing. My interpretation of this is that I'm being a mature, emotionally regulated adult by doing so. Urgency does not equal emotional maturity. Another thing I need to mention here, when I saw that mom's beautiful post that I mentioned earlier, was that even though it resonated with me, it also activated something in me. And this is important because when I felt activated or triggered, that was not her responsibility to manage. It was my responsibility. I had to pause and ask myself, Sarah, what is this post bringing up in you? There's something here for you if this feels a little uncomfortable or a lot uncomfortable. And the answer was simple. When Rocca was little, 14 years ago, the internet did not feel like a safe or healing place for me. Autism was not a normal conversation online at that time. TikTok did not exist. There were certainly no communities like Autism Changemakers. I carried a lot all alone. Part of me still remembers that deep feeling of isolation. Part of me still thinks, be careful. Keep quiet. Protect him. And that voice is not old. It's not wrong. It's just there. And that version of me deserves a pause and some compassion. Because she was doing her best. But again, managing that trigger was my responsibility. Nobody else's. So something I ask all of you to hear clearly is that your triggers are information. Your triggers are actually your best teachers. They are not instructions. If someone else shares something that makes you uncomfortable, that doesn't automatically mean they did something wrong or they said something out of line. Quite often it means something inside of you needs attention. If I had read this woman's post and been depleted, if I hadn't been committed to my own inner work, I might have unfollowed that mom or blocked her post or judged her or decided she overshared. But instead, I was able to pause and realize that triggered grief from an earlier season of my life. And that's mine to process, not hers to fix. In fact, thank you for showing me something inside of me that was important for me to be with and to release. No one on the internet can be responsible for regulating everyone who follows them. It is impossible. And even if it were possible, it is not their responsibility. I do want to gently say something here to all parents, no matter how old your child is, but especially if your child is younger and this is new for you. It's okay to share. It is okay to need support. It is okay to be honest and vulnerable. But please remember, you are not just protecting your child today. You're protecting their future as well. Their access, their reputation, their educational and social opportunities, their long-term trajectory. And once something is online, it lives there. Even lawyers I've worked with over the years have said if something could be used against your child later, don't post it in real time. Share it later after the fact, if you want. But think long-term rather than short term. There's one last piece here that matters to me. When something activates inside of us, which will, if you're parenting a non-speaker, because we all have hard days, more of them than most, you have a choice. You can blame the person who triggered you. You can blame the school, the district, whoever. Or you can take responsibility for what it brought up. And those are two very different paths. You can't be a victim and be responsible at the same time. Responsibility is where power lives. Responsibility is where healing lives. So if you're a parent trying to decide what to share online, here's what I want you to know. There's not one right answer. The only right answer is one that protects your child and your nervous system and your child's long-term well-being. And here's the truth I've learned after doing this for a really long time. Parents need and deserve support, real support, not comment section support, not algorithm support, not the support that comes through likes and shares. Because social media is not always a safe place to process the hard stuff. Sometimes what parents actually need is a private room full of people who already understand their life. This is exactly why I host monthly support circles inside the safety of autism change makers. They are not for public consumption. They exist. So parents of non-speakers have somewhere to bring the real things, the complicated, emotional, scary topics that they shouldn't have to figure out alone without worrying about judgment or screenshots or worrying about protecting their child's reputation while they're still trying to survive today and figure out what to do next. If social media doesn't feel like a safe place to process what you're carrying right now, come sit with us instead. The next support circle is coming up soon. And you are welcome to be there with us.