Why I stopped hiding my kid’s neurodivergence

For years, Margaret Ables believed the kindest thing she could do for her autistic child was to help them blend in. Then a single article reframed everything she thought she knew about acceptance and disclosure, and what her kid actually needed from her.

She and host Jessica Shaw dig into the messy, evolving work of showing up as yourself in a world that isn't always built for you. This is a candid, funny, occasionally heartbreaking conversation about shame, self-advocacy, and belonging.

• Watch: Guiding a neurodivergent kid through grief (by breaking all the rules)

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Margaret Ables: I have no problem looking at judgy people and saying, "My kid has autism and they're having a hard day. And we're going to be here for about 15 more minutes doing this. If you'd like to move away from us, feel free." I think you can say, "We deserve to access this place, we have a plan to access this place, and we will access this place because we belong here just as much as everyone else who's trying to access this place."

Jessica Shaw: Margaret Ables has three kids. The oldest one has autism; he's 17. Over the years, she's become a firm believer in the idea that whenever possible, neurodivergent kids should be able to show up as themselves in the world. But it took her a while to get there.

Margaret: Maybe because my child lives very close to the line of being able to pass as, quote-unquote, neurotypical, that I sometimes struggled. And I think I wanted very much for myself and for my kid for them to pass.

Jessica: Since then, Margaret's perspective has shifted a lot. She's learned through experience that passing, even when possible, is not always in the best interests of a child. Sometimes putting the diagnosis out there and being transparent about your kid's challenges and limitations can actually unlock opportunities.

And it pushes the world to move a bit closer to our kids rather than always pushing our kids to adapt themselves to the world. I first spoke with Margaret when I was a guest on her podcast, "What Fresh Hell: Laughing in the Face of Motherhood," which she co-hosts with Amy Wilson.

I invited her on my show because I wanted to know more about how her thinking on all this has evolved and about what lessons she's learned along the way. This is "Everyone Gets a Juice Box." I'm Jessica Shaw.

When Margaret's son was little, she did not hesitate to take whatever measures were needed to keep him and his siblings safe.

Margaret: When all of my kids were young, I would — because I had three kids in four years, so I had closely spaced siblings — my oldest with autism tended to be a runner. And then I had two stationary kids at any given time. As soon as all three of my kids were mobile, whenever we went out, I dressed them in neon shirts so that they were easy to find in a crowd.

And I wrote my phone number in Sharpie on their forearm because I was like, "I'm going to lose them at some times." I did lose them at some times and people had to call me and be like, "I have your child here in a neon shirt with their number written on the arm."

Jessica: But when it came to protecting her son in other ways — not from danger but from judgment — Margaret was much more reticent.

Margaret: I mean, I think as a young mom, and especially I had a very evolving diagnosis with my kids, so it wasn't always 100 percent clear it was autism. And I was, as all moms are, very like, "I will have the best kid at the birthday party. I will have the most charming child at the supermarket. And I will not be one of those people who has a child flipping out in the aisle of the grocery store."

First of all, I didn't do the work of preparing for situations. I wasn't always good at like, "We don't go to the grocery store when kids are hungry." And then when stuff started to go wrong, every cell in my body had the instinct of, "We just leave."

I apologize to the grocery stores where I left a half cart of groceries and just grabbed my kid and ran out the door because I did feel a feeling of, "I don't belong here, this is not how children are supposed to behave, and I have to get out of this situation."

And then on the flip side, going into situations like birthday parties or sleepovers or any of the myriad of school-based friend-relating activities, I probably would have thought, "We can't go to that." I sent my son to a class that was not a special ed class early on. They kicked me out, basically. It was a Gym-O-Rama kind of class.

It super hurt my feelings and I just slunk away and I didn't deal with it. I would now go back and say, "Hey, my child is not able to access your classes because they have autism. Have you thought about having a class that's geared more towards kids with autism or a time of day where they could access it?"

(01:54) Margaret reflects on the early days and the desire for her child to "pass" as neurotypical.

Margaret: At the time, I was like, "Embarrassing, they hate me, they hate my kid, we're sneaking out the back door." And I have a lot of anger still towards those people, and I yell at them at 3:00 a.m. in my mind. But now, I would have gone back and said — probably I would have started the class by saying — "Will my child be able to access this successfully? Would it help if they have me or another teenage aide dedicated to them in this space?"

So definitely my idea was, when in doubt, hang head in shame and run away as fast as possible.

Jessica: Was there something that you felt like with your child in particular that you needed him to be able to do? Was there ever anything of like, "Listen, don't do X," or "I need you to behave like this"?

Margaret: I can think of a lot of examples, but one that jumps out to me is age-appropriate, right? That in elementary school, it was like, "Oh no, the fourth graders are not dressing as Woody and Buzz anymore. They're dressing as Marvel characters. So I'm pushing you to get a Marvel costume because the other kids are going to think it's weird if you're still dressed as Woody in fourth grade."

Those are the kind of elements where I think, this is my wrong. This child expresses themselves — they might in eighth grade still love Woody, and that's okay. And that I'm not making the world better for them by making them dress as a Marvel character so that the other kids don't think they're different.

Those are the kind of moments that I think about. You know, if you have a child who's super expressive or loves to talk about their special interest, that the instinct, I think, to say, "Stop talking about Pluto because your classmates think you talk about Pluto too much." That's where I try to check myself a little bit and say, "This is who you are in the world. And I don't want to force you into a mask of normalcy that robs you of the joy and the incredible specialness that you know this much about Pluto."

It's so cool that you know that. And that's not going to be accepted in seventh grade, but that's going to be a wonderful skill later on. And I will say, also doing this with my neurotypical kids. Like, you don't have to listen to the album that everybody in middle school thinks is cool when you really like punk music from the '80s. I wouldn't tell my neurotypical kid, "Don't do that, be more like the other kids," because fitting in is not the most important thing.

But when you have a kid who's more different, that challenge, I think, gets a little bit harder.

Jessica: Do you remember what it was — I mean, I guess that shifted for you? I mean, I relate to that; I think a lot of parents relate to that, especially when it's your first kid. You're figuring out so much as a parent and you just want things to be easy.

I mean, to put it plainly, you just want it to be easy for your child. Who doesn't want that? And I hear you, like I feel like I had a lot of just figuring out like, "Oh, I'm just going to try and like, not talk about things too much and sort of hope they go well." For you, since you did evolve, you did have a change of how you approached that part of parenting. Was there a specific moment that shifted things for you, or was it a series of smaller ones?

Margaret: It was definitely a series of smaller ones, but I do remember reading an article that really stuck out to me — and I should have made a note of it at the time because I don't remember the author or even where I found it. It was a young man talking about being raised, who was gay, and being raised in an environment that was accepting but. And so the exceptions were kind of like, "Yes, it's fine that you're gay, but don't act this way and don't be so expressive in these ways."

I found a parallel to myself where I was like, "Of course it's fine to have autism," but I was putting a lot of focus on acting normal. That was becoming a north star for me and that was a huge misdirection. And that kind of metaphor that I found of like, "Oh, this parent is accepting that their child is gay as long as they don't, quote-unquote, act gay."

And I was like, "Whoa, I think that might be a little bit what I'm doing with my child on the spectrum." That I am accepting that they have autism, but I'm putting a ton of effort into trying to get them to, quote-unquote, act normal.

And it was a cold water splash for me. And I think that the metaphor is in both situations is that the parent would say, "I'm just trying to make sure it's easier for you." But that's a place where we need to move the world closer to our children and say, "I'm not going to focus on making my child fit a mold that people expect. I am going to focus on keeping my child out of danger situations, educating my child about what's going on in the world."

Really changing my mindset from, "The most important thing is that you act neurotypical," to "The most important thing is that you as this very specific individual person has the tools you need to function in any given situation." For me, that was kind of the light bulb.

Jessica: Letting go of this need for your child to fit in is a big step in and of itself. It can be very freeing for kids and their parents. But there's an added benefit to being open and to disclosing. The more neurodivergent kids and their families show up unapologetically as themselves, the more institutions recognize that they need to step up and meet those kids where they are.

Over time, Margaret has seen a real shift on this front. She told me about a recent trip she took to the Bronx Zoo. She was with her three kids and their two cousins, one of whom is autistic. She came prepared.

Margaret: My older kid on the spectrum manages fine at the zoo. But I have a kid who I'm not as familiar with his behaviors. And so I had done this with my own kid on the spectrum when they were younger. I got a lanyard that goes around their neck with a little card with all the information: "This is my name, I have autism, here is a phone number you should call if I am lost."

And I explained to the kid, "This is what this information is." And the other thing that I did, which I never did — my kid on the spectrum is now 17 years old, so the world has changed a lot since I was raising a little kid on the spectrum. I went to the ticket counter and I said, "I'm here with a kid with autism. What do you offer for kids with autism?"

And they gave me a nice little bag — which I don't think this would have existed a decade ago when I was there with my kid at seven years old — that had headphones, that had a face card that a lot of kids on the spectrum use to explain emotions, and it had like a nice map that explains stuff. So I was able to say like, "We'll see the elephants, and then we'll see the buffalo, and then we'll go to the monkey house and that is going to smell really stinky. And so if we go in there and we don't like that, we can go out the door we came in."

And I think being open about being there with a kid on the spectrum, most people are quite willing to help and institutions have gotten a lot better about having structures in place to deal with it. So rather than going to the door and just being like, "We're in the monkey house, we're two doors in, and I'm realizing this was a huge mistake and I've got a kid who's melting down because it smells really bad in here," I have already said to the person at the front door, "We might be coming back out this door if this kid doesn't like the way it smells in there."

And they're accommodating that. And so I have found going to all sorts of different places, doing kind of a lot of disclosure upfront makes my time at that activity much easier.

Jessica: I mean, first of all, I have so many thoughts about what you just said. The first thing is, like I almost got choked up when you told me what the Bronx Zoo offered because that's so different from when my kids were little. The fact that they're giving headphones and explanations and — I mean, I hope every zoo in the country and the world is doing something like that.

And making a place like a zoo — which, okay, they're kind of stinky, but they're also super fun — making it accessible for so many kids is just — I'm really — that just makes me very happy.

Margaret: Yeah, it is and it does; it can make a huge difference in the accessibility. And I think that historically, people have thought about disability access as people in wheelchairs, people with mobility issues, or physical, sight issues, hearing issues. And that historically those have been starting to be addressed, but I'm just now seeing autism being part of that story.

And one of the conversations that we were having on my podcast that I have struggled with a little bit is this piece of disclosure upfront. Because I think for a lot of us, we just want our kids to enjoy the experience. And we don't want to go in and say, "My kid has a disability or a difference," and I have to acknowledge that.

And for me it's been a learning process of kind of closing the gap of saying, "The more we acknowledge my kid's needs in any given situation, the better my kid's experience of this is going to be." And that when I try to just be like, "You're going to the Bouncer-Roo party because that's what all the kids are doing," and I don't want to take away from that experience in some way by disclosing that the child has autism, it actually works against them having a positive experience.

(08:24) Teaching the child how to self-advocate and disclose their diagnosis as they grow older.

Margaret: Because you're not starting a conversation about the different ways that kids experience the world at zero. You're starting with being able to say, "This is a kid with autism, so they may be more sensitive to smells and noises. They may have less tolerance for a six-hour field trip. Can we maybe bring them for the first three hours of the field trip?"

And that once people are having discussions about how to be inclusive in a true sense — I feel sometimes inclusivity becomes, "Sure, they're welcome to the bounce house," but it's going to be playing loud music and there's going to be a thousand kids screaming. You're including that person, but if you've got headphones for a kid who's very sensitive to sounds, that's a very different kind of inclusivity than just, "They're welcome here."

It's, "They're welcome here and we're making accommodations to make sure that their experience here is positive." That's changed a lot.

Jessica: Do you worry about what other parents will think or what their response is going to be? I mean, you can only do so much.

Margaret: Yeah. I think over time I worry about that less and less. I worry about, "What's the best outcome I can set my kid up for in this situation?" And whether that's calling a mom and saying, "Hey, you're having a party at the Bouncer-Roo jumpy disco-land."

Jessica: I love that place.

Margaret: And I would like my kid to be able to come. But I have found that loud places sometimes trigger a meltdown in my kid. Here's some options. I could come with my kid and just sit in the background and read my book, and if there's a problem I can intervene. Or are you familiar enough with autism and meltdowns that I can just send my kid and that's something you can handle?

I think — and we talked a lot about this — the pain is in the gap, is an expression that my partner Amy uses all the time. And I think sometimes we just so want our kids to have an accessible and normal experience that we're afraid of that part where we have to acknowledge that our kid may struggle in this situation.

And for me, with my kid on the spectrum, that is often a conversation I'm having with my child. And it's also changed a lot as my child has gotten older. So now I have a 17-year-old. And my 17-year-old — and there's a lot of terminology here that people have very different feelings about, so I'm just going to use some terminology and acknowledge that it doesn't work for everyone — my 17-year-old is high-functioning and can, in many situations, pass as a neurotypical child.

That's not everybody's experience. But it has invited a dialogue with him as he starts to do many more things on his own, including about to head off to college, about, "Do you think you should disclose that you have autism before going into this situation?" Because on the one hand it may make you feel self-conscious, and it may make you feel like you're leading with your difference, and it may make you feel vulnerable.

But in another way, are there situations where that disclosure will help you access supports that will make your experience more helpful? So I was doing that work for a little child, but as he gets older, we're now having conversations about me handing that scaffolding job over to him and saying, "If you want to access this experience, what will be the problems that you're going to face?"

Jessica: Tell me about practicing that. I'm so curious about that and I want to learn from you. What was that conversation like? Like, what does that look like to practice?

Margaret: So my child flies by themselves, for example. But if you start to struggle and have a hard time, it is important to me that you disclose to the person in charge that you have autism quickly and early. And we practice that because that is going to help you in a situation where you're lost and panicking.

The sooner you say to the police officer, stewardess, whoever comes to you, "I have autism and I'm very, very nervous in this situation and I'm feeling out of control," the more that person is able to help you. I think the more honest and forthright you can be with your child about "This is what autism is. These are some of the behaviors that it causes. Do those sound familiar to you?"

The way that you struggle, that you might meltdown over a change of plans and your brother and sister don't, that's autism. Autism has some gifts that it's given you — my child on the spectrum can tell you anything that happened on any date you want to know and what day of the week it is. And my other kids marvel at his ability to do that.

But it also makes it harder for you to access social conversation sometimes. So the way that you're struggling to make friends in this situation, part of that is autism. Let's read some books about that. Let's talk about that.

Jessica: Just to close the zoo, the zoo loop for a second — all things zoo. How did everything go? Because like, now I need to know how everything go. It's like you and five kids. Five kids. Any issues?

Margaret: It was a mess and a joy — like all outings are. I will say, the outings where I've gone to the front desk and said, "This is who we are, this is the situations that we're dealing with, and we are trying to access as much of this as possible." And the Bronx Zoo has a great monorail. So kids with autism tend to love trains.

That was a huge hit, right? I knew we were heading there. And then at a certain point the smells and the tiredness and the hot got to be too much for them and we left. And we might have stayed an extra two or three hours if I didn't have a kid with autism with me, but it was a huge success as an outing. That's what I'll say about it.

And I've learned a lot from a lot of non-successful outings. So if you're listening and being like, "Oh, I wish I could have outings like that," believe me, I've had a kid laying on the floor of a really disgusting New York City outing and screaming and crying while other people looked at me like I was a horrible person. So I've also been there.

And it didn't happen overnight, but I have really built that skill over 17 years of being a mom. And I think what happens often is we turn it on ourselves: "We should have never come, we're bothering other people." Sorry, people. I deserve to be at the Bronx Zoo and my kid deserves to be here just as much as every other kid at the Bronx Zoo.

Now, do we deserve to be at Le Cirque during the dining hour? Maybe not with any of our kids. But we definitely deserve to be at the Bronx Zoo and we're here. Get used to it, people.

Jessica: Absolutely. I wish I had listened to this episode like 16 years ago when I was a young mom because these words are so, so important.

Margaret: Well, so do I. I mean, I wish I had listened to this episode too because I wasn't born this way, but I do feel like there are skills and tools that everybody can use to make every place accessible and then the world needs to start saying, "We have a responsibility too."

Jessica: Yeah. Margaret Ables, I love getting to talk to you. Thank you so much, thank you so much for being here today.

Margaret: I'm so glad you have this podcast. I hope everybody listening is feeling not challenged and like, "Oh, someone's really figured this out and doing it better," but just like, "This is a journey that we're all on and we're in it together."

Jessica: Yeah. Thank you so much to Margaret Ables for this conversation and for so perfectly describing every outing with your child in a mere five words: a mess and a joy. Because you kind of can't have one without the other. It's both, and it's parenting. See you next time.

Thanks for listening to "Everyone Gets a Juice Box." The show is hosted by me, Jessica Shaw. It's produced by Julia Subrin and Anna Rothschild is our senior podcast producer. Video is produced by Max McKenzie and edited by Lance Johnson. Our associate director of content development is Calvin Knie.

Briana Berry is our production director and Neal Drumming is our editorial director. If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to podcasts@understood.org. The show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson.

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