When Progress Is Real But You're Still Not Enjoying Your Life

 If your non-speaking autistic child is making real progress — and you still can't enjoy it — this episode is for you. 

I recorded this because I see it constantly in my work with parents of non-speakers. The spelling is improving. The sleep is better. The hard moments are fewer. And yet you're still bracing. Still scanning. Still waiting for something to go wrong. And then comes the guilt — because you know things are better, and you still can't feel it. 

This is not a character flaw. It's what happens when hypervigilance has been your baseline for so long that your nervous system doesn't know how to receive the exhale — even when it's finally safe to take one. 

In this episode I talk about: 

• Why your child's progress moves faster than your nervous system's ability to receive it — and why that gap is completely normal.
• The "waiting for the other shoe to drop" pattern that keeps autism parents stuck in survival mode even when things are improving.
• Why pouring everything into your child can quietly become another way to avoid slowing down and receiving support yourself.
• What it actually takes to move from survival mode to presence — and why it doesn't happen automatically.
• The one question I invite every parent to sit with: where am I still living on alert, even though things have changed?

Your child's progress does not automatically create peace within you. You do. And you don't need to earn the right to receive support. You've already done that.
 
If this resonated, come find me 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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Hello and welcome to the Autism Changemakers podcast. I'm your host, Sarah Antonato, and I'm committed to bringing you unfiltered, unedited episodes that actually help you in your life today as you raise a non-speaker with autism. Today's episode might sting a little in a good way, and we're taking a closer look at what happens when progress is real, but you're still not enjoying your life. Let's set the stage for this. Your child is actually making progress. Maybe they're spelling more and more or have achieved open communication. Maybe their diet is improving, and that's a huge win for you. Maybe they're sleeping through the night, no matter how old they are, and we all know what an enormous win that is. But you, despite this progress, still feel tense, tired, or like you can't actually enjoy your life. If this feels familiar, welcome. This is the episode for you. In my work as a coach to parents of non-speakers and unreliable speakers, this is something I see all the time in our community of parents. And it's not talked about nearly enough. There's the assumption that once things start to get better with your child, you will automatically feel better. That once your child is more regulated, or they don't have any health issues that are pervasive, or they're communicating more, that your nervous system will just automatically adjust. And you'll finally exhale and start living on easy street. But this is not what happens. What actually happens is this. Your child's progress is moving faster than your nervous system's ability to receive that progress. Because for so long, you, the parent, have been living in a state of utter hypervigilance, urgency, problem-solving mode, sometimes 24 hours a day, constant scanning for what's wrong or what could potentially trigger your child in any situation, that this level of hypervigilance becomes your baseline. And it's not something that happens overnight, it's something that happens slowly over time. It's like that old metaphor of putting a frog in a pot of water and slowly turning the heat up so that the frog doesn't realize the heat is going up until it's burning and can't jump out of a boiling pot. Same with you. When hypervigilance slowly over time becomes your baseline, it becomes impossible for you to snap your fingers and switch ears when your child starts to improve. Because your body is still bracing for the other shoe to drop, even if there is no other shoe to drop. Your body's still scanning, still anticipating the next thing. So you end up in this really confusing place as a parent, where on paper things are better. And maybe not just on paper, but in your daily life, there's a little more breathing room. Things that normally cause your whole day to go up in smoke are not happening. Or at least not happening as frequently. This is a good thing, of course. But internally, you don't feel better. And then comes the guilt. You know you should feel better. I use air quotes around the word should, because you're starting to experience things that you used to pray for. Your child is communicating more and more, for example. This is an amazing thing. But somewhere inside of you, you're feeling unsettled, and then you have guilt for feeling unsettled because this thing that you prayed for was supposed to make you happy. You start asking yourself questions. Why can't I just be happy? Other people would be so grateful for this. I told myself I would be so grateful for this. What's wrong with me? I'm here to tell you nothing is wrong with you. Your nervous system just has not caught up yet. I'm going to give you an example of this from real life. Last week I spoke with a mom, an incredible mom, who is doing everything for her non-speaking child. She had literally just spent thousands of dollars to fly across the country and take her child to a specialist because she's so committed to her child thriving. Not only is she committed, she is tenacious, she is intelligent, she's resourced. This woman will do whatever it takes to help her child. She openly came to me seeking help. And when I invited her to join us in Autism Changemakers, a place that can actually support her, something she admitted she needed, she hesitated over joining a group that's $29 a month. And I want to slow this down for a moment because it's not actually about the money at all. This is a testament to the nervous system patterning that she's living in. Because when you've been in survival mode for a really long time and you've programmed yourself to be available at a moment's notice for your child, you've also programmed yourself to become completely unavailable to yourself. And she was the perfect example of this pattern. Somebody who looks like on the surface, she's crushing it, she's doing everything. But on the inside, sort of not functioning in terms of being able to exhale, being able to even acknowledge the progress that she and her child have made together, and actively moving through her day in fight or flight mode, even though her child is making significant progress and is now an open speller. When you have lived in survival mode for this many years, you cannot expect your nervous system to downshift overnight. That's not how your body works. When you have programmed yourself to believe to live by these standards of all of your energy going outward and never inward, justifying anything in the name of your child, and justifying giving nothing to yourself. Of course, you can't immediately snap your fingers and change your identity level programming. It took you time to build the identity of a martyr or someone who lives in hypervigilance mode. It might take you time to release that as well. If your identity has become that of, I'm the strong one, I'm the one who handles everything. Of course, it can feel really edgy to claim the identity of I'm someone who deserves to be supported. I'm somebody who can receive help. So that survival story, that story of being the strong one, being the survivor, being the person who can handle everything, comes from a place of good intentions, but it works until it doesn't. It works until you're living in fight or flight mode, and it works until your body starts sending you signals that change is needed. And in your life, those signals might look at, might look like rather your child sleeping through the night, but you're awake at 3 a.m. researching on the internet. You bypassing your intuition, you knowing that something doesn't feel right anymore, something in your routine isn't sustainable, but yet you keep doing it because you don't know what else to do. And when this mom hesitated over joining autism changemakers, which I know will help her, I see this every day. Because she's now adapted to becoming someone who does it all alone. Let's go a deeper layer with this. Investing in your child, feel safe when you're operating from this place, but also because on some level, it is easier. It can become another box to tick. It can become something you can say, I did the thing, and check it off your to-do list. You can measure it. It's action-taking, wheels are in motion. And if you've been in hypervigilance mode, you probably only feel safe if you're in motion. And it's extremely validated by the society that we live in to just be busy, just do more. But investing in yourself requires you to slow down, receive support, be with parts of yourself that maybe the busyness has allowed you to numb for a really long time and not be the strong one for a moment. Who are you without the story that you have to be the strong one all the time? Really pause with that for a moment. And then ask yourself, what benefit do I get from telling myself the story that I have to be the strong one all the time? Who would I be without that story? And for a nervous system that's been holding everything together for a really long time, just asking these questions can feel threatening. So if you felt the urge to turn this episode off and distract yourself with something else, or maybe go to the fridge for a snack, or multitask, I just want to acknowledge you because you're still here listening now. And I know this is really uncomfortable. And the point here is to just allow the discomfort. You don't need to soothe it, you don't need to distract yourself from it. You're not doing anything wrong by being uncomfortable. In fact, it's a sign that you're doing something right. What's possible for you if you just lean into it instead of running away from it? So let's go back to the beginning. What happens in this scenario when your child makes progress, but you don't exhale? It's because the part of you that would really feel safe receiving that exhale, receiving that ability to acknowledge we can downshift from survival mode. We don't have to live there anymore. We don't have to live there, at least right now, doesn't feel safe because survival mode is all you know how to do. And until you support that part of yourself that feels worthy and deserving of that exhale, that feels safe in that exhale, you will still continue to wait for the other shoe to drop. And this is why I say your child's progress does not automatically create peace in your home. And it definitely does not automatically create peace within you. You do through regulating yourself, supporting yourself, and allowing yourself to receive the support, the acknowledgement, the connection from others who actually understand your life and can see it and can feel it with you, and validate for you that it's okay to exhale now. So I invite you to gently ask yourself, where in my life am I still in survival mode? Even though things have improved? Where am I still living on alert instead of allowing myself to just be present? Where am I pouring everything outward and giving nothing back to myself? Because this is exactly why Autism Changemakers exists. Not just to help your child, although we love doing that, but to actually help you so that your nervous system can finally catch up to the life you've been working so hard to build and will continue to build. You don't need to earn support, you don't need to earn the ability to receive. You've already done that. And you definitely don't need to stay in survival mode just because you've gotten really good at it. If this episode landed with you, if it touched a nerve, I invite you to comment on social media. Send me an email. Let me know what really resonated with you, even if it felt a little uncomfortable. And I invite you to join us in autisticism changemakers as well. The doors are open at any time. You don't have to be perfect first. You just have to be willing to be curious around all of these things we discussed today. But I've seen parents like you do impossible things for your child. So I know it's possible for you to do them for yourself as well.