Would you say that fear is the predominant emotion you feel in your day-to-day life as an Autism parent? More than sadness, anger, or jealousy, we are afraid as Autism moms. Fear drives us, follows us, and haunts us, and that’s why it’s time to take a deep dive into this topic.
One of the biggest reasons the stages of grief theory don’t resonate with me is that it doesn’t feature fear. Fear comes and goes for us Autism parents all the time, from before the diagnosis, after the diagnosis, to decades on. Fear remains a huge part of our experience, and it makes perfect sense.
Join me this week to discover how fear and grief are interwoven in your experience as an Autism parent, and a few ways fear shows up in our everyday lives. You’ll hear why fear is a normal reaction to the loss of certainty and control that the Autism diagnosis brings, and how to begin experiencing the emotion of fear without letting it run your life.
You are listening to episode 85 of The Autism Mom Coach, Fear. One of the biggest reasons the stages of grief don’t work for me is that they don’t feature fear. Which in my experience as a mom of a child with Autism and a coach, this is the predominant emotion that so many of us feel all of the time, more than sadness, more than anger, more than jealousy, we are afraid. Fear drives us. It follows us. It haunts us. So we’re going to talk about it this week. Stay tuned.
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 and other comorbid diagnoses. I know what it is like to wonder if you are doing enough or the right things for your child and to live in fear of their future.
I also know that constantly fueling yourself with fear and anxiety is not sustainable for you or of any benefit to your child. That is why in this podcast I will share practical strategies and tools you can use to shift from a chronic state of fight, flight to some calm and ease. You are your child’s greatest resource, let’s take care of you.
Hello everyone and welcome to another episode of the podcast. I am glad you are here and as always I hope that you are doing well. And if you caught the drift from last week’s episode, When Things Suck, things have not been great for me and really for so many of my clients, there’s been a lot of struggle. And I know it ebbs and it flows, but sometimes when it is here, it just feels like again and it’s never going away, which it does and we learn to adjust. We learn to recalibrate. But all of this is a lot of work and so that’s been my work really in the past couple of weeks.
It’s interesting being a host of a podcast and also a coach for other moms, because when I’m experiencing things in my life, I almost get meta about it right away where I think to myself, how would I teach this? How could I use this? And lately I have been trying to tell myself later, instead of trying to think about how I would use an experience as a teachable moment for you all to actually allow myself to be in the moment and process it without trying to make it a lesson in the moment.
And so I just want you to think about that, when you’re experiencing something. And this week we’re going to talk about fear. How sometimes we catch it, but then we get meta about it. Maybe we start telling ourselves things like, we shouldn’t be thinking fear. And whatever we say to ourselves that actually prevents us from processing the emotion and so it lingers.
So enough of that, let’s talk about fear. The four letter word, the real four letter word of Autism. Now, if I were to talk about the grief of parenting a child with Autism in stages and you know I don’t subscribe to the stages. But if I did, fear would be first, third, fifth and seventh. It comes and goes for all of us all of the time before we get the diagnosis, after we get it, after 5, 10 or 20 years, the fear remains. And I want to talk about why this makes perfect sense.
Let’s start talking about what fear is. Fear is an emotion that we feel in our bodies in response to real or perceived threats. So the real threat of a dog running after you or a car running a red light. Those are real threats and our bodies react. But we also react to perceived threats. We could be watching a movie and we could feel fear. We could be thinking something in our brains, catastrophizing, thinking about the future, thinking about the what ifs. And all of that creates the emotion of fear in our bodies although we are not physically in danger.
And this is really important to note that we feel fear based on perceived threats because in reality the real threats out there that we can name like disease or war or losing your job, those things, those real things that happen, those aren’t the things that are the scariest to us. The thing that is the scariest that causes the most fear in any human being is uncertainty, the not knowing, the not being able to control an outcome. And this is exactly what Autism serves up to us every day in some form or another.
So before we talk about fear and grief, I want to point out something I think is important. Fear is not a bad thing. From an evolutionary perspective in fact, fear is a natural and emotionally intelligent response to uncertainty. In fact, fear is hardwired into our biology as an evolutionary adaptation. This is because throughout human history, encountering the unknown often meant facing potential threats like predators or environmental hazards. Fear served as a warning signal alerting our ancestors to be cautious and prepared when they encountered unfamiliar situations.
And this ancient survival mechanism helped our species to thrive and survive by promoting vigilance in the face of uncertainty. And it continues to serve us, for example, fear enhances our situational awareness. When we are uncertain about a particular situation, fear heightens our awareness and encourages us to gather more information. Think about all of your Google searches about Autism. Your fear of the unknown drove you to gather more information, to be more attentive, to ask questions, to seek out help, to make better informed decisions.
Fear can also motivate us and drive us to prepare for the unknown. It prompts us to consider various scenarios, assess potential risk, and create contingency plans. This proactive response to uncertainty can lead to better outcomes and increased resilience. For example, perhaps you’re afraid of getting diabetes or dying of a heart attack like other folks in your family and so you take steps to exercise. You take steps to eat a healthy diet and to avoid things like smoking and fatty foods.
Or with respect to Autism, so many of us have fear of what happens when we’re not around. And so what if this fear isn’t altogether a bad thing? I’m for sure afraid of that but I have taken plans. I have created a will. I have created a trustee. I have taken certain steps to protect my son when I’m not around. Is it comfortable? No, but the fear has motivated that in some respect.
Fear can also motivate us to step out of our comfort zones and push us to overcome obstacles and adapt to new circumstances. I hear this all of the time from my clients who don’t view themselves as advocates or would describe themselves as not wanting to rock the boat or stand up to authority, yet they sure are at the IEP meetings with their doctors and with other specialists. Their fear of their child not getting what he or she deserves is prompting them to step out of their own comfort zones.
This is all to say fear can be helpful. It is not a bad thing. And it is very interwoven with the grieving process experienced by Autism parents. Let me give you a couple of examples of how I see this showing up.
First, fear of the unknown. Like I said before, Autism is the definition of uncertainty. We just don’t know. Now, this is true of everything. We don’t actually know a thing. We can have plans and life can take a turn at any time because nothing is promised. But this is not how we live our lives. We make plans, we have expectations, and we live with the delusion of certainty. Then our child is diagnosed with a disorder that has no set trajectory. So of course we feel fear of the unknown. We feel the weight of their future outcomes on our shoulders every day.
How many times have you wondered, what will my child’s future look like? Or we fear that our children might face discrimination, bullying or struggle to find acceptance as they grow older. All of this fear that we feel of the unknown is interwoven into our loss of our expectations of how we expected it to be.
Second, fear of isolation. We fear this both for our children and ourselves, and for good reason. Having a child who does not speak, wears headphones or melts down whenever they lose a game can surely result in typical peers not understanding or wanting to engage with them. And this is heart wrenching for us. Put on top of that, maybe you are the only one in your family or friend group or zip code that you know with a child with Autism. Maybe you feel like no one gets you and maybe you’re right.
Between therapies and work and everything else, you don’t have time or maybe even the mental or emotional capacity to do the normal mom things. Or maybe when you are around other people, you spend so much time resenting them in your brain, so maybe you don’t even say anything. Or maybe you’re not saying anything, but your face won’t shut up and it is showing that you are disgusted or annoyed. Or maybe you finally do say something and then you fear not being invited or being ostracized from a friend group.
Another way that fear shows up in Autism parenting that I see is interwoven into the loss that we experience is our fear of judgment, judgment of our child, judgment of us and judgment of our parenting. This is actually one of my most frequently coached topics in my one-on-one program. Fear of telling other people about the diagnosis. Fear that you are branding your child and that they will be limited by other people knowing they have Autism.
Or moms who fear taking their kids to a playground or a birthday party or out in public at all because they fear their child will have a meltdown and other people will judge them. They fear that other people will say or think something negative about their child or about them or about their parenting. Even if they don’t say it out loud, the moms that I’m coaching are fearing what other people might think in their head about them. Although we have no way of knowing what other people think.
I have seen kids melt down a bunch and I’m never thinking, well, that parent really doesn’t have it together and that kid is running the show. My thoughts about a child melting down in public are very different now because of my experience with Autism. And so we never know what other people are thinking, but we have these thoughts and this is how they show up. Whatever you fear, the judgment is of you, it’s because you already have the fear and the judgment of yourself.
Next, fear of regret. Okay, this is probably the most frequently coached topic and the most frequent emotion experienced by me, fear of not doing enough. Fear of not doing the right things. Fear of pausing. Fear of not adding more to your plate. Fear that one day you will find out information that will lead you to believe a previous decision was wrong. This fear is like a terrorist, it can’t be negotiated with once you start engaging with it. And if you decide to engage with it, you will never win.
Because I’m going to tell you right now, there will be information in the future that says maybe this would have been better or maybe that would have been better. That’s inevitable in all areas of our lives. The only thing you can control is your decision about how you treat yourself about whatever new information comes out because regret is a decision. We are always making decisions in the moment based on the resources available to us and the information available to us.
And then to fear while we’re making that decision that we’re not making the right decision and we might regret it. That’s just adding so much pressure. You’re putting yourself in a lose/lose situation here but it’s also common. So many of us fear that no matter what we do, it might not be right or it might not be enough. And we fear our own regret about it.
Okay, finally, fear of burnout. This is actually what led me to coaching. I think I’ve talked about this before on the podcast. But I was in the middle school orientation for my son and it was really overwhelming to me, imagining him in this scenario of a very big school with alternating schedules. And watching the other kids and the other parents interacting with the staff and just thinking to myself, how am I going to do this? How am I going to keep him intact, basically?
How am I going to continue to work my full-time job, help him with homework, help him with all of the anxiety that he has? And right there my fear of not being able to continue on or continue at the level I had been operating for so many years is what led me to seek life coaching. Because I didn’t want to talk about all of that. I wanted a way of doing something better. I wanted a way to interrupt the burnout because as we all know, this isn’t a sprint. It’s not a marathon.
Marathons have maps. They have starting points, and they have ending points. That’s not what is happening with Autism parenting. The trajectory is going to be what it is and we don’t really know. And so our fear of our own ability to keep up and to keep doing it is just another one of the ways that we experience the grief and the loss of this journey.
Alright, that is just a few ways that I see fear showing up in our lives. And I see this fear as being intertwined with the loss that we are already experiencing as Autism moms. So I want to offer this to you. What if we looked at our fear as normal, not pleasant, but normal? Not as in you need to be scared all the time, but when you are reminding yourself that this is a normal reaction to the loss of certainty you are experiencing. Instead of fighting the fear or trying to solve for it, what if you were just able to recognize it in your body where it shows up, how it feels and allow it?
If you are thinking right now, that sounds like a full-time job. I promise you it isn’t. This is because most of the time when we feel fear in our bodies our reaction is to do something, to Google, to spin in our brains, to write a nasty email to a teacher, to yell at our partner for not reading our minds, whatever it is. Most of us don’t actually feel the fear and then pause. This is not how we are biologically programmed. Remember the nervous system, when we are feeling fear, when we are in fight, fight, we want to fight or we want to flight, we want to act.
The way to counteract this normal biological response is to pause, get out of your brain and into your body. Slow your body down for yourself, self-soothe. And once you’re able to bring your nervous system back to some safety, once you are able to assess your rational thinking, you will be able to experience and process the emotion of fear without being run by it. Alright, that is it for this week’s episode. I hope you found this helpful.
And I just wanted to bring light to the role that fear plays in our lives every day. And I just want you to know, if you are feeling fear, that this is normal, but your experience of it might not be ‘normal’. It is very patterned into us when we feel fear to want to act on that fear. And some of the times that is very helpful, but other times our acting on the fear is actually just creating more of the anxiety for us. So that’s why I’m encouraging you to pause and to allow yourself to process the emotion without getting run by it. Alright, I will talk to you next week. Have a fabulous week.
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 this is exactly what we do in my one-on-one coaching program. To schedule your consultation, go to my website, theautismmomcoach.com, Work With Me and take the first step to taking better care of yourself so that you can show up as the parent you want to be for your child with Autism.