Autism Awareness Month Is Not Supposed to Feel Like This

 If you’re raising a child with non-speaking autism and Autism Awareness Month doesn’t feel supportive, I want you to know you’re not alone. 

In this episode, I’m sharing why April can feel so heavy for parents of non-speaking and minimally speaking autistic children—and what I do to protect my energy during this time. I talk about the impact of online advocacy, nervous system regulation, and why stepping away from social media can actually create more meaningful change at home. 

In this episode you’ll learn: 

• Why Autism Awareness Month can feel overwhelming for autism parenting
• How online spaces can drain your energy without helping your child
• Why supporting yourself is essential to supporting your child
• How to refocus on connection in non-speaking autism

My hope is that you walk away feeling more grounded, clear, and empowered to take your energy back where it matters most—your home and your child.
 
If this resonates, you can connect with me on Instagram @sara.intonato or explore more 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. If you’re craving that kind of support, come join us. https://www.autismchangemakers.com/
 

Transcript

SPEAKER_01 0:03

Hey, hey, everybody. Welcome to the Autism Changemakers podcast, where we are committed to bringing you unfiltered, unedited information that's actually going to help you in your life today, parenting an autistic non-speaker or an individual with high support needs. Today's episode is going to touch a nerve. And I know that because it touched one from me when I wrote it. And it is about Autism Awareness Month is not supposed to feel like this. April is supposed to be the month when families like ours feel supported. Finally, when we feel seen, acknowledged, resourced, understood. But for a lot of parents of non-speakers, especially autistic individuals with intense support needs, Autism Awareness Month doesn't feel supportive at all. In fact, it feels loud, political, contentious. Truly, it feels hostile. So today I'm going to talk about what Autism Awareness Month is supposed to be, why it doesn't feel that way anymore, and what I personally do to stay steady and grounded in April and beyond, so I can keep showing up for my own child and my community without getting pulled into the dumpster fire that is the internet in the month of April. So let's set this up. If you're parenting a non-speaker, you're already doing something enormous, you're navigating communication access probably through a few different methods of communication, especially if you've tried everything like I have. Medical complexity, caregiver logistics, school systems, gut issues, sleep issues. We've all been there. Seizures, safety concerns, inclusion, isolation, and advocacy, whether you ask for that role or not. So Autism Awareness Month should be that one time of year when the culture around you says, Hey, we see you. How can we help? Instead, many parents experience the opposite. People who do not live your life suddenly feel very confident telling you what you should or shouldn't be doing. What counts as acceptable support? What counts as real communication? What counts as ethical intervention? And last April was actually the first time I was ever actively trolled online for simply talking about the realities families like ours live with every day. Not opinions, realities, caregiver strain, biomedical challenges, access to support services. And I was shocked. Not because disagreement exists, that's normal, that's healthy. But I was shocked because parents were being told they weren't allowed to talk about their own children's needs. Let's be clear. That's not awareness, that's silencing. And then to be told those needs are not real, or those needs are you not accepting or loving your child is gaslighting. Here's what I see happening. Autism Awareness Month has become a political battleground inside the autism community itself. People in our community who all should have the same goal of supporting families like ours are fighting about communication methods, biomedical treatments, identity language, support needs, labels, research priorities, parent voices, self-advocate voices, and professional voices. And somewhere in the middle of all of that noise, parents raising children with profound support needs are just trying to get through the day. You are not trying to win an internet argument. You are trying to help your child. And help them with really significant things that change the course of their life. Like their sleep quality, which every human needs, how they communicate with those around them, how they digest food so that their bodies can thrive and be healthy, how they can stay safe, especially if you're dealing with elopement or really intense sensory seeking. How they learn, how they participate and connect, where they belong. And when people who don't live your life tell you that your efforts are wrong, that hurts. Of course it hurts. Because you are not experimenting on a theory, you're not conducting research in your house. You are caring for your child, a real human being who lives a real life that has needs. Here's the truth about internet advocacy. And this is something I want to say very clearly. Being a keyboard warrior never changes anyone's mind. Almost never. Research on persuasion and online argument consistently shows that public comment section debates rarely shift people's positions. In fact, most people double down when publicly challenged. So parents are spending an enormous amount of energy arguing online. They are working to emotionally regulate themselves, sometimes for hours per day, and getting almost nothing back in return. Meanwhile, your nervous system pays the price. Your sleep pays the price. So does your mood. And as a result, your family, your child. This is not advocacy. This is depletion. Let's call it what it is. It is sneaky because it allows parents to tell themselves the story that they are busy for good reason. Especially if you've been in hypervigilance mode for a long time. Busy feels normal for you. You don't know how to rest. So what happens when you get a reprieve in your life? Do you take it or do you head to the internet to find someone to argue with, to tell yourself the story that you're continuing to be productive and do something meaningful when in fact it's just a waste? Real advocacy, the kind that changes the world for autistic individuals, happens much closer to home. It happens in your living room, in your child's classroom, in sessions with therapists who you trust who actively support your child in ways that you know in your gut to be powerful, in your grocery store, in your community, certainly in your school district, and in your relationships. And most importantly, it happens when your child gets access to things people once believed were impossible for them. That's advocacy. When your child communicates, participates, learns, connects, surprises people, changes expectations in the world around them. You are shifting the culture right there, without posting a single comment online, without making a single reel. So I'm going to share a few things that I personally do every April to stay steady because I live a life online and in person. And I know this month can get loud. And the internet can get as loud as it wants, but I want your life to feel change-making, useful, and continue to be one or become one that actually brings you peace and joy because you are the one living it. And so is your child. The first thing I do, full stop, I spend time with actual humans. And before you say, I feel so isolated, I don't know anyone around me, neither did I. My son was diagnosed with autism before TikTok existed, before it was cool or safe to discuss autism online. There was nobody I could connect with to find my people, especially 15 years ago. But guess what? I found them anyway, because I was committed to finding them in real life. It took me time, certainly, but I spend time now with actual humans, parents who I know, families I trust, those who have children with autism and those that don't. But people I know have my back, no matter what. People from our local surf camp, which I found when I didn't know it existed. People from the spelling community, both online and in person. Many of them have become my role models. And I searched high and low to find role models who would actually help me in my life as a parent. People who understand our lives from the inside, because the internet is not real life. Unless you've been living under a rock, you know that social media changes your nervous system. It changes how you sleep, how your hormones function, how reactive you feel. And when you step back into real human relationships, even old school telephone calls, you remember how much goodness actually exists in the world. You remember you are not alone. And that matters more than any comment section ever will. And I also want to acknowledge this happens in small ways. Like when you take your child with you to go buy one thing in the grocery store, and you introduce them to the cashier while your child is chewing on a chewy and maybe holding a sensory toy or using their AAC or their letterboard, you build that human connection. It becomes familiar. It turns into your child knowing everyone in the whole store. It turns into people in your life seeing you on good days and bad days and feeling connected enough to you that they acknowledge you on the good days and they show you love on the bad days because they know you are a valued member of the community, and so is your child. And now that so much of life happens online, you buy your groceries online. Parents are losing these tiny chances to see the spirit of humanity in motion, for their faith in humanity to be restored. Maybe the cashier at the grocery store doesn't know anything about autism, but they know about human kindness. And that matters. The second thing I do, and this should come as no surprise, but it might, I limit my time online significantly. This year, I gave up social media after 6 p.m. for Lent. I'm not super religious, but I do observe Lent because I think it's an intelligent thing to do, to challenge yourself for a period of six weeks every now and again. Certainly something that can support your well-being always seems like a good idea. I didn't give up social media altogether. My work is on social media. But simply changing the cutoff time to 6 p.m. changed everything. My evenings are calmer. My sleep is certainly better. My sense of urgency in the second half of the day is lower. Significantly so. My nervous system feels steadier. And I have to call this out. Parents who are in my DMs tell me all the time, I don't have time for self-care. And yet, when I see how much time they are spending on social media making reels, mind you, I am not a tech dinosaur, but I know how much time it takes me to make a really good reel that's engaging, to thoughtfully put energy into it, it's not nothing. And I see how much time these parents, many of whom don't even run online businesses, are spending making reels, writing posts, reading comments, responding to strangers. If you have 15 minutes to make a reel, and then 30 minutes to go back into the comments, to share it, then you have 10 minutes to support your child's spelling at home. Or building the co-regulation that would eventually lead to spelling. If that has to happen first. And in the words of my very first spiritual teacher, you make the time for the things you want to do. The third thing, and this may come as a bit of a surprise. I focus my advocacy where it actually works, where it actually yields results. If you want to change the world for autistic individuals, start with your own child. Start with your own school district. Start in your town. Start in your community. Start with the environments your child lives inside every single day. Because when your child does something that someone once thought was impossible, it changes people. When they see it with their own eyes, they can't unsee it. Not in a comment thread or in a social media post, but in an actual human experience. All of these moments show people in real life what presuming competence is. And that is the spark that ignites systemic change. Maybe not overnight, but undeniably. So let's call it out. I see amazing, good-hearted, loving parents who care, spending hours creating content online. Many of them are stay-at-home parents, the most important and challenging job in the world. They're not running businesses, they're not building programs, they're not selling products, they're not creating support networks that actually elevate someone with tools. They're just posting. And yes, I totally understand that connection and relatability can happen through a post. I've met amazing people on the internet. The callout comes when those same parents tell me I don't have time to eat properly. I don't have time to join Autism Changemakers.

SPEAKER_00 18:57

I'm too busy.

SPEAKER_01 19:00

I don't, especially if your child is still small, but no matter how old they are, if your child has needs, then your leadership matters more than your content calendar. Your presence undistracted in your home in real life matters more than your engagement metrics. And your emotional steadiness matters way more than your follower count. Autism Awareness Month could be a time when parents feel like they are on the receiving end of actual support. Like they're encouraged and strengthened instead of corrected by strangers, instead of being debated by people who don't live their lives or told what kind of parent they're allowed to be. And until the culture catches up to that reality, and this might take some time, let's go create that support for each other in real relationships, in real communities. And I recognize that if you live in an isolated part of the world, your online community might become your real community. I'm so honored that Autism Changemakers has done this for countless members who didn't have anyone in real life. We create that support for each other inside our homes, our families, but most importantly, we create it inside of our own nervous systems. And that support inside of yourself is where everything else has to start in order to make a difference.