Non-Speaking Autism Parents: Stuck Between the System and Self-Trust

 If you're parenting a non-speaking autistic child, there's a space you might be in right now that almost nobody is talking about. 

You don't trust the system anymore. You've seen the gaps. You've watched experts underestimate your child and hand you a piece of paper that looks nothing like the child you know. 

But you haven't fully stepped into trusting yourself yet either. 

So you get stuck in a loop. You feel a deep knowing — and then you hesitate. You look for someone to confirm it. You get mixed answers. And you come back to your original gut feeling, but less confident than before. 

That loop is exhausting. And it's keeping you dependent on a system that was never designed specifically for your child. 

In this solo episode I talk about: 

• Why this in-between space happens — and why it's not your fault
• How autism parents are conditioned to defer to experts even when their gut says otherwise
• Why your proximity to your child is not bias — it's data
• What it actually looks like to trust yourself from a grounded, anchored place

You don't need more proof of who your child is.
You need more permission to trust what you're already seeing.
 
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

SPEAKER_00 0:02

Hello and welcome to the Autism Changemakers podcast. I'm your host, Sarah Antonato, and today's episode is one I am very excited to share with you because we're taking a close look at a space that is so small and so sneaky that a lot of people aren't talking about it. But we're going to talk about it because it's important and it's a place I see a lot of parents getting stuck. And it is that place in which you don't trust the system to support your non-speaking child, but you don't fully trust yourself yet either. If you've ever had that quiet thought, I don't think this is enough for my child, or there's so much more in their brain than they're showing the world, or that this expert can even see, but then immediately follow it with but who am I to say that? I'm just the mom or I'm just the dad. This episode is for you. And again, this is a very specific loophole that a lot of parents are getting caught in now. And it's this space that most people don't even think to look at. You've already outgrown the blind trust in the system to support your non-speaking child, no matter how old they are. You see the gaps, you see the limitations and the glass ceilings imposed upon your precious little child. And again, this might be your adult child who's still precious to you. You can see how quickly people are willing to underestimate them or dismiss them altogether. And you don't buy into it. So props to you. And I want to acknowledge that that in itself is a win. But even though you don't fully buy into those narratives anymore, you still have not stepped into trusting yourself either. You're in this in-between space where you know, and then you doubt, where you feel something deeply, a knowing really, and then you hesitate and look around for someone else to confirm it for you. And it becomes a loop. You notice something, you get a really strong gut feeling about it, and then you question it. You seek input from external sources. Of course, you get mixed answers at this point, and then you come back to your original knowing, that original gut feeling, but you feel less confident in it than before. And let me tell you, this loop that you're in is exhausting, and it keeps you dependent on a system that was never designed specifically for your child in the first place. There's a reason this happens. You've been conditioned as a parent to a non-speaker or an unreliable speaker to defer to the experts over and over and over again. To believe that someone with a title or a degree knows your child better than you. Now, if you're listening to this podcast, you might be thinking, oh Sarah, I don't do that anymore. But let's point out some subtle ways this happens that you're probably not even seeing. When someone working with your child says, Oh, let's see if he's ready. I'm not sure. He may not be. Even though in your gut you know he is. When an expert says, we don't want to push them too much, or this might be too advanced for them. These little phrases that make you question yourself. And while it is good to question ourselves from time to time, to be able to reflect objectively on our child's journey, over time, you start outsourcing your own perception, your own knowing of your child to others. Not because you're weak or you're doing anything wrong, but because the stakes feel too high to make the wrong choice. Or because you feel like you need to walk around all day with a research library attached to your back to, at a moment's notice, be ready to prove that your child can, in fact, handle something challenging. And you, the parent, are not crazy. But here's the truth: you are the only person in that entire system who is actually living with your child 24 hours a day. You see the micro moments that nobody else sees, the eye shifts, their attempts, their tenacity, their frustration, the intelligence that doesn't always have a clear pathway out. That proximity that you have as a parent, that is not bias. That's data. And you trusting yourself does not mean that you ignore everyone else. It means you stop abandoning yourself in the presence of other people's opinions. It means you can hear input without losing your centeredness. You can take in information and evaluate it without handing over authority. You can make decisions before there's a full consensus. Because usually there won't be. Especially when you're moving in a direction most people don't fully understand yet, as a parent of a non-speaker. And I want to say this really, really clearly now. If you've been waiting for someone to agree with you before you give yourself permission to move forward, you're not behind at all. And you're not doing anything wrong. But you are on the edge of a major seismic shift. But if you stay in that place for too long, waiting for the powers that be to sign off on your decisions as a parent, that's where time gets lost. Remember, the systems in place in our society surrounding autism are not built for nuance. They are built for large categories that can support masses of people, for averages, for the things they've seen before, for predictability. And your child may not fit easily into any of that. Which means at some point you become the one who has to hold the vision, even when it's not fully reflected back to you yet. I have a client who took her daughter for an evaluation a few years ago. And her daughter was about seven at the time, and they met this expert who was doing the evaluation at a building near her home. And they walked into this office, and it was the office of an older gentleman who'd never met her child. I'll politely say he did not seem to be really present to some of the newer discoveries around motor planning and non-speakers and presuming competence, in her words, not mine. He was about 100 years old. The room was probably 85 degrees Fahrenheit, so it was hot. And he would mark things in his chart about her child before her child had even finished doing the tasks on the evaluation that he'd asked her to do. So it seemed to my client that this gentleman had a lot of preconceived notions about autism and how her child learned and was not really paying attention to her child as a unique individual. Unsurprisingly, at the end of the evaluation, he rattled off a list of diagnoses and deficits that he believed her child had. As she left the evaluation and put her child in the car to drive home with her husband as well. She admittedly felt a little bit rattled because what this professional had written down on paper that she now held in her hand seemed nothing like her child or how her child learned. And not only did he feel down, but he started to say things like, Oh, I guess we have to completely change schools now based on what this guy said. And I guess we have to completely alter all these things that we were doing that were working, because this person said we shouldn't do those anymore, or we should do it differently. My client had her husband pull the car over on the side of the road. She looked at him and said, How dare you let that person who barely took the time or expended any energy in getting to know our child tell you who she is or what she needs. But she said the real mic drop moment for her in that car on the side of the road was when she saw how quickly her husband was ready to. Because he felt vulnerable. He felt untrusting of himself. He felt afraid of making the wrong choice. These are real scenarios that happen every day. So this is what I mean when I say this system is not built for nuanced, and you are the one holding the vision for your child, even if it's not being fully reflected back to you yet. You do not need more proof of who your child is. You need more permission to trust what you're already seeing. So if you're listening to this and you want to think deeper about one area where you've been hesitating in your life, I'm going to grant you permission to pull over on the side of the road or sit in the bathroom alone for five minutes, or stay in the garage in the car for a few minutes before you go back into the house to parent. And really be with yourself. And after a few minutes of quiet, ask yourself about what's the one area in life where I've been hesitating, that's been quietly nudging me, or that one place in my life where I've been waiting, waiting for clarity, waiting for someone else to agree with me, waiting for someone else to validate it, even though I already know it to be true. What would it look like if I moved forward on that from a place of self-trust instead? Not impulsively and not recklessly, but from a grounded place where I feel anchored and clear. And I have decided from a place of trust, this is the right next step for me. And this is the right next step for my child and our family. This is the work. Not just helping your child expand and grow and learn and regulate, but becoming the kind of parent who can hold that expansion without constantly second guessing it or second guessing yourself. And this is exactly what we do inside of Autism Changemakers. This is the work. And you don't have to do this work alone, and you definitely don't have to keep looping around in doubt, like a merry-ground that's making you dizzy, and yet you're insisting on holding on to that merry-ground, going around and around in circles, even though you're ready to throw up and you just want to get off. What's possible for your whole family if you just get off the merry ground? This is a different way of leading your child. And it starts with trusting yourself.