Last week was about how parenting a child with autism changes you for the better. This week is about the other side of that coin—the changes that aren’t healthy, even when they feel necessary. In this episode of The Autism Mom Coach, Lisa names the hidden cost of sustained caregiver stress: the hypervigilance that keeps your nervous system permanently switched on, and the way your baseline for “normal” quietly warps until you can no longer tell the difference between what is merely hard and what has become genuinely dangerous. It’s an honest look at how resilience can tip into burnout, and a reminder that no human is built to carry this level of stress without help.
In this episode, you’ll learn:
- How chronic hypervigilance—constantly scanning for the next crisis—keeps cortisol elevated and your body in a state of sustained stress that you can’t simply switch off, even when you want to.
- Why your sense of “normal” gets warped over time, using the frog-in-boiling-water metaphor to explain how you can acclimate to an eight-out-of-ten stress level until you no longer recognize when things have crossed into unsafe territory.
- How to tell the difference between healthy resilience and quietly tolerating more than is reasonable, and why stepping back to separate the events from your reaction to them is what makes long-term survival possible.
Resources mentioned:
- Email Lisa directly: lisa@theautismmomcoach.com
- Schedule a consultation with Lisa
Related episode:
Autism Changes You: How Parenting a Child with Autism Makes You Stronger (Ep #194)
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TRANSCRIPT
You are listening to Episode 195 of The Autism Mom Coach: Autism Changes You, Part Two.
Welcome to The Autism Mom Coach Podcast. I am your host, Lisa Candera. 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 well. This week’s episode is a Part Two.
Last week, I talked about how autism may not change who our children are, but it definitely changes who we are in so many good ways. But it’s not all good. And that is what I want to talk to you about today—the other side of it. Because not all of the changes are positive. Some of them are necessary. Some of them are normal responses to an abnormal level of stress.
But that does not make them healthy. And that’s what I want to talk about. Because if we only focus on the growth and never acknowledge the cost, we miss something important.
In fact, even some of the positives—like resilience, advocacy, and adaptability—have another side. Advocacy can turn into being constantly in battle mode. Resilience can turn into isolation. And adaptability can turn into tolerating conditions that truly require intervention.
So let’s get into it.
First, there is the hypervigilance. When you are parenting a child with significant behavioral challenges and complex needs, we are constantly scanning for danger. We are reading the room. We are reading our children’s body language. And we are anticipating anything that might set them off at any given moment.
Because of this, our brains stay on high alert. In our world, the next crisis could be seconds away.
But this turned-on stress response all of the time, with raised cortisol levels, is what makes us sick. While this might feel smart and necessary—and sometimes it is—it also creates a situation where we are never relaxing. We are always on. And that chronic state of stress, that sustained stress, is what makes us sick.
And while this hypervigilance seems necessary, and in some ways very much is, it is not great for our bodies. When everything is a potential danger, our nervous systems stay on alert. We can’t just turn it off.
At the same time, we struggle to do the things that would help us ease up on the stress. And even more than that, we’re afraid to ease up on the stress.
How many times have you felt like if you relax, that guarantees something is going to go wrong and you won’t be ready for it? That is the spin cycle we are in. When we are in a chronic state of hypervigilance and scanning for danger, we never get to relax.
And then, as a result, the second thing I want to talk about is how our baseline for what is “normal” gets completely warped. Not normal in the sense of atypical versus neurotypical. When I say “normal,” I am talking about the difference between really challenging and actually dangerous.
This brings to mind the metaphor of the frog in a pot of boiling water. The frog gets put in the pot when it’s tepid, and as the temperature increases, it doesn’t really notice it until the pot is boiling. Here, the boiling pot is autism parenting, and we are the frogs.
When you live at an eight out of ten on a stress scale every single day, you stop recognizing it as an eight. It just becomes your life. So when things escalate to a ten, it doesn’t feel that different. You think, okay, it’s a little bit more than usual. But in reality, the whole thing—the eight and the ten—is off the charts for what most people would consider sustainable.
That’s the thing about life, and especially about stress. You acclimate to whatever level you are living in. It becomes your normal.
I remember when my son was first admitted to an inpatient autism hospital, and the doctor remarked on his presentation as severe. I was pretty shocked. I really didn’t see it. For me, all of the things the doctor considered severe were just a Tuesday.
I had acclimated to it. I didn’t see how off-center we had gotten, even for a family dealing with a complex diagnosis.
This was the medical director of an autism inpatient center saying this to me. He told me, “I see hundreds of children with autism every year, and here is what I’m telling you.” That was pretty shocking. But it was also helpful.
It was shocking because it was my normal. My baseline was so warped that I couldn’t see it. That’s what happens. You get desensitized. Your baseline shifts. There is so much you can’t see because you are inside of it.
When you’re living it every single day, you lose your frame of reference for what is reasonable, what is sustainable, and what is actually dangerous.
And that leads me to the next point. Sometimes these never-ending challenges force us to tolerate and endure more than is reasonable—even under our circumstances.
Maybe your sense of normal has shifted so much that you are living in burnout and don’t even recognize it. Or you are living in a situation that is genuinely unsafe because it happened gradually. Each day was just a little bit harder than the last.
Every time you asked for help, you were told, “Oh, this is normal,” or “They’ll grow out of it.” You adapted. You told yourself, “This is just my life.” That old “suck it up, buttercup,” right?
And look, I get it. That toughness and resilience serve us in a lot of ways. But there is a difference between being resilient and rising to the challenges life presents, and tolerating things that truly require a greater level of intervention than we can provide on our own.
There is a difference between resilience and refusing to acknowledge when you are drowning. There is a difference between being strong and ignoring every signal your body sends you that you need help and something needs to change.
The line between what is normal under our circumstances and what has crossed the line is fine. It’s tricky. But I want to urge you to be on the lookout for it.
So many of us get calloused by this journey. We get into the mindset of, “This is just my life, and I have no other choice.” In addition to managing complex, challenging situations every day, we stop clocking it for ourselves.
We stop listening to ourselves. We stop listening to our bodies. We stop taking our own signals seriously. We bury everything and say, “I just need to get through tomorrow.”
If this is where you are, I get it. I have been there. You are not alone.
The autism parenting journey is complex, and it can be isolating—especially during periods of sustained stress and acuity. You can feel like you are the only one going through it. You are not.
Even though it feels normal for you, it is not normal for any human being to live with sustained stress without help and support.
If this episode felt familiar—if you resonated with any of it—I want you to check in with yourself.
Has the pendulum swung too far in any of these directions?
Are you living at the edge of the extremes?
Is your nervous system stuck in overdrive?
Has your baseline for normal shifted so much that you can’t tell when things have crossed into potentially dangerous territory?
If so, drop the “suck it up, buttercup” story. Drop the belief that this is just your life and you have no choice.
You deserve your own attention and care. This is hard. It does change us. And we need every ounce of strength, energy, and resilience to ride the waves of autism parenting for the long term.
That doesn’t come from white-knuckling it. It comes from stopping, pausing, asking for help, and recognizing when something feels like too much to carry alone.
Maybe that means going to the doctor, finding a therapist, or finding a community. For me, it was a combination of all of that.
But the most powerful shift was learning how to step back from what was happening and separate the events from my response to them. I had become so reactive to my son’s meltdowns that I was flipping out before he was. That’s how far off-center my own regulation was.
Seeing that, understanding it, and doing the work to take better care of myself mentally and emotionally is what enabled me to survive several years of acute stress and aggression with my own kiddo.
It didn’t mean the problems evaporated. It meant I had a clearer understanding of where I was, where I needed support, and how to let that support help me.
So I’m going to end this episode by saying: you are not alone. You do not have to do this alone. You can reach out for help.
If you feel like there is no one else in your life you can talk to about this, email me at lisa@theautismmomcoach.com. I promise I will respond.
All right, everyone. Have a great week, and I will talk to you next time.
Thanks for listening to The Autism Mom Coach. If you are ready to apply the principles you are learning in these episodes to your life, it is time to schedule a consultation call with me. Podcasts are great, but the ahas are fleeting. Real change comes from application and implementation, and that is exactly what we do in my one-on-one coaching program.
To schedule your consultation, go to my website, theautismmomcoach.com, click “Work With Me,” and take the first step toward taking better care of yourself so you can show up as the parent you want to be for your child with autism.
