It’s Autism Acceptance Month, and Lisa is reframing one of the most vulnerable parts of autism parenting: the feeling of being on display in public. In this episode of The Autism Mom Coach, she traces her own evolution from viewing those moments as a failure to be avoided at all costs (apologizing, over-apologizing, parking illegally to dodge the drop-off line) to seeing them as exactly where awareness becomes real acceptance. Through stories from a school drop-off, a Chipotle counter, a ski shop, and a stranger on an Amtrak train, Lisa makes the case that showing up visibly with your child, messy and inconvenient as it can be, is how change actually happens.
In this episode, you’ll learn:
- Why being on display is where awareness turns into acceptance, and how Lisa shifted from treating these moments as a personal failure to seeing them as an opportunity to show the world what autism really looks like.
- Why you do not owe anyone an apology for your child being autistic in public, and how letting your child take the time they need (to order, to transition, to be themselves) is worth a few extra minutes of someone else’s wait.
- How showing up visibly and without apology, even when it is loud or inconvenient, models real inclusion and invites the curiosity and compassion that genuine acceptance is made of.
Resources mentioned:
Related episodes:
Being on Display: What Real Autism Acceptance Looks Like in Public (Ep #141)
The Fear of What’s Next: Anticipatory Anxiety as Your Child Approaches Adulthood (Ep #176)
Tantrums vs. Meltdowns: Why the Difference Matters (Ep #173)
Listen Here
Transcript
You are listening to episode 162 of The Autism Mom Coach, Being on Display: The Truth About Autism Acceptance.
Welcome to the Autism Mom Coach podcast. I am your host, Lisa Candara. 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 hope you are all doing well. So it is April, and that is autism awareness/autism acceptance month, and because of that, I’m really excited to talk to you about today’s topic. Have you ever been in a situation with your child with autism in a public park, at a grocery store, and you feel like you are on display for whatever reason?
Maybe your child is flapping, maybe they are rocking, maybe they are crying because they can’t wait in line. Whatever it is, you feel all eyes are on you and you are on display. That is so much of the experience of being an autism parent because our children do stand out sometimes, right? Either them or their behaviors, or both So that’s what I want to talk to you about today because the way I used to view being on display was something to be avoided at all costs.
I viewed being on display as a failure of some sort, a failure of mine to be able to control my child in the traditional sense that parents are supposed to control their kids, a failure on the part of my son of being unable to abide by all of the written and unwritten rules of being out in a public setting.
So if you’ve ever felt those eyes on you and the stares, and you are just hating the fact that you are that family again, I see you, and I want to offer you another way of looking at this because my view of being on display has evolved. And now I think that being on display is where autism awareness and acceptance, like the rubber meets the road.
This is where the true acceptance begins. It’s the line between theory and reality, between knowing autism exists and choosing to understand what it actually looks like. And that understanding, that begins with us
But I didn’t always feel this way. Like I said, I used to view this as a failure and something to avoid at all cost. And that’s exactly what I was trying to do when my son was in third grade. I dropped him off at school, and we were in the car drop-off line, and he was really struggling to get out of the car because he had so much anxiety about school, and we were just taking a lot of time.
Meanwhile, cars are backing up, et cetera. So in order to avoid being that family holding up the line and being on display, I decided instead that I was going to park my car illegally, and I was going into school, up to his classroom with his teacher, quickly explain everything he was anxious about. So after a couple of weeks of this, it was decided that my son’s one-on-one aide would come out and meet him at my car and escort him into the building.
And this was a perfect solution because Ben loved his aide, Mr. Chris, and having Mr. Chris with him in that transition felt really supportive to him, so he was all for it, and it worked really well until it didn’t One day we pull up to the school and we’re scanning the crowd. No Mr. Chris. Mr. Chris was always standing in the same place every time, and he wasn’t there.
And I started to get a little nervous, and Ben started to panic. And, uh, right at this time, a parent volunteer walks up to the car, opens the back door, and as soon as she opens the door, Ben slams it shut. He’s in the back crying and screaming, “I can’t go, I can’t go, I can’t go.” So here we are holding up the line.
I decide to get out of the car, walk around to the back seat and try to talk him down. He is not having it. He’s in a full on panic. And at this point, this is five minutes into it. There are buses that are in this line. There are cars that are in this line. There are parents that are walking up to the school with their children for drop off.
There are all the kids and parents on the lawn waiting for the, the bell to ring. All eyes were on us. I was mortified, and all I could think about in those moments is they are looking at me and my son and thinking, “He’s too old for this. A third grader should not be having those issues. This mom is being too lenient.”
All of this is what is going through my brain. This is what it feels like to be on display. Everybody’s watching and nobody is understanding
And so what did I do? I apologized and apologized, and I over-apologized. This is how I operated for years. Whenever my son had any difficulty out in public, I was trying to make it go away as fast as possible, and I was usually over-apologetic when I did not have to be. So if this is you, I totally get it.
Nobody wants to be center stage while they’re just trying to drop their child off for school or get their groceries. But the fact is, a lot of times we are center stage. Our children do bring attention to themselves. Maybe it’s your 15-year-old wearing a Paw Patrol T-shirt. Maybe it’s your six-year-old having a breakdown at a grocery store, or a 10-year-old having a breakdown at the playground because the other kids aren’t playing right, or he has to wait in line for something.
Whether it’s a particular behavior like a meltdown or an outburst or just something that they’re doing or wearing or how they are being, there are lots of times where we will be on display. As Ben got older, this was true for us, but one thing had changed a lot and that was my mindset about what does it mean to be on display with your child with autism.
What does it mean when your child with autism is being autistic out in public? So as Ben got older, I was done apologizing. It’s not our job to be quiet and convenient for everyone else. Of course, we’re not looking to cause a commotion or any trouble, but sometimes, sometimes we do. So it would be the little things like letting Ben order his food at Chipotle.
Obviously, I could do that and I could do it quickly, but I wanted him to start doing this himself. Well, Chipotle is really loud, and Ben being able to communicate what he wanted to the server took more time, and there was a line. I could have just said, “Step aside, I’ll handle this,” or a- apologize to people, apologize to the server, but I did none of that.
I let him do what he was there to do, and he did it, and nobody died. Everybody got their food. Maybe they had to wait five minutes more, but that was the extent of it
There have been times that we’ve been on display as Ben has gotten older that were more related to behaviors that people would find unacceptable, especially for a child his age. I remember when Ben was 15 years old, he was so excited to go skiing. We brought in his skis a week or so before the season started so they could get tuned up and be ready on opening day.
Ben’s anxiety being what it was, we actually went the day before opening day to pick up the skis, and we’re waiting in line, waiting in line, and this woman makes the joke to Ben, “Sorry I can’t find your skis. I guess you’re not skiing this year.” Well, talk about know your audience. This was like setting off a bomb inside of my son’s head, and so what he did was he yelled and he screamed and he pounded his fist on the counter.
This temporary outburst was very much related to his autism, the expectations, the rigidity, not being able to understand a joke, and just having all this anticipation and frustration just coming out. I didn’t apologize. Actually, the opposite. I was really annoyed with this woman for making such a thoughtless joke, and this was such a huge shift for me in how I handled these situations
And it felt so much better to me than it had in previous years where I felt like I was hiding or apologizing. This time I was showing up for my son, and I was on his side, on the side of him being who he is wherever he is
Now, obviously there are limits to this. I’m not talking about dangerous behaviors and saying, “Hey, you be you.” But for all of the other things, it’s… I think it’s our opportunity to reassess what it means to be on display because this is what autism looks like in real life. It’s not polished, it’s not quiet, it’s messy, and it’s real.
And I think that if we are going to be on display, that we can use this as our opportunity to show the world how it’s done. I have an example of this from a couple of years ago. It was during the summer, and Ben was scheduled to go on a vacation with his father, who lives in New Jersey. So I decided to take the train from Connecticut to Philadelphia because his OCD was so severe, I didn’t think driving was safe.
So I booked us business class tickets just to ensure that we would be sitting together and hopefully not around anyone else. Well, this was on Amtrak, and we were seated in this configuration where there’s a table and there’s four people around it, and so it was be me and Ben and one other person who was a young man, probably in his mid-20s.
He had his laptop open. Ben was rocking. He was tapping his fingers on the table. He was looping over and over. At some point, Ben got up to go to the bathroom, and this kid turns to me and says, “Excuse me.” And I was like, “Oh, here we go. Here it comes.” And what he said to me was this: “I do not know what is going on here, but you are doing an amazing job.”
And I was stunned. I was completely shocked. I think I immediately started to tear up because I was so stressed out navigating Ben through this trip and, and here is this person who not only got a front row seat to our usual, he was being curious, and he was being compassionate. To me, this is what autism awareness and acceptance really means.
It means being out in the world. It means being messy or inconvenient, and it means other people adjusting and adapting and learning. That’s what inclusion is. It’s not hiding, and it’s not apologizing. It’s being real. It’s honoring your child and who they are and what’s happening with them, and it’s also being kind and compassionate to yourself because it takes a lot of energy and courage to be navigating a child who is different around a world that expects sameness and conformity
This is how change happens, in real time, everyday moments like this, in the drop-off line, in the grocery store, the Amtrak train. Awareness is knowing autism exists. Acceptance is what you do when autism shows up and is sitting right next to you
This is not possible if we’re not showing up with our children, even if it’s loud, even if it’s inconvenient for others Because I really do believe that autism acceptance, it starts with us. And if we are going to be center stage, let’s show up and show others how it’s done. So I encourage you, the next time that you feel like you are on display, lean into it.
Lean into it and get curious in those moments about how you can show others what autism is and what it looks like, and what it looks like to support a child in real time so that they can participate in life. Our own being that family. You are being visible, and that is powerful. Let them see you. Let them see autism.
Let them see what supporting a child with autism looks like. All right, everyone, that is it for this week’s episode of the podcast. Now, if this is something you struggle with, the fear of being on display, the fear of other people’s judgment, or just not knowing how, or just not knowing how to handle… Or just not knowing how to support your child during difficult moments, especially in public, this is something I can help you with in my one-on-one coaching program.
To learn more, all you need to do is schedule your complimentary consultation by using the link in the show note. All right, everyone, I will talk to you next week
Thank you 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.
