To disclose…or not?
Who do you tell about your child’s learning and thinking differences? When? Does the explanation depend on the situation? And how are you preparing your child to own those ongoing disclosure decisions?
This episode, hosts Lexi Walters Wright and Amanda Morin tackle these questions. They talk with families whose experiences range from triumphant to cautionary — and in-between. You’ll hear from a mom whose daughter’s very public dyslexia disclosure turned her into an author. And from a parent whose son’s refusal to disclose cost him a scholarship.
Advertising pro Wilson Standish shares why he’s still cautious about disclosing. And expert Manju Banerjee, PhD, gives tips to help parents with the sometimes-scary task of passing the torch to their young adult kids.
Amanda Morin: [00:00:04] Hi. I'm Amanda Morin, writer with Understood.org and a parent to kids with learning and thinking differences.
Lexi Walters Wright: [00:00:10] And I'm Lexi Walters Wright, community manager for Understood.org. And we are "In It."
"In It" is a podcast from Understood for Parents. On our show we offer support and some practical advice for families whose kids are struggling with writing, social skills, motor issues and other learning and thinking differences.
Amanda: And today we're talking about disclosure: who we tell, when we tell, and how we tell when it comes to our kids' learning and thinking differences.
Lexi: [00:00:38] So Amanda, will you kick us off: What is disclosure? What do we mean when we say the word "disclosure"?
Amanda: [00:00:42] Disclosure is a really fancy way of saying "talking about it." So when we're talking about our kids having learning and thinking differences, it's who do you tell that to? Disclosure is deciding to tell family. It's deciding to tell teachers. It's deciding under what circumstances it's a parent's job to talk about it, under what circumstances you throw that to your child to make that decision.
So disclosure is a really big idea, right? It's something we talk about a lot when it comes to having kids with learning and thinking differences, because there are some circumstances where parents don't necessarily want to talk about it. And then there are other circumstances where it's really important to talk about it.
Lexi: [00:01:21] And so when does disclosure come up? Can you give us some examples of when you need to make the decision as a parent as to when or not to disclose?
Amanda: [00:01:30] Often it comes up in school first, because when a child's having trouble in school or struggling or needs a little support, it's time to start talking about it with teachers so they can help you figure out what support your child needs. And sometimes it's about coaches in the community, it may come up as well.
And then I think as our kids get older, they need to start thinking about if they're going to disclose or talk about this with their friends. For example, a kid who struggles with reading may want to say something before they go out to a restaurant, because reading that menu may be a little tough for them too, right?
Lexi: [00:02:03] Well, you know, we recently got a voice memo from a mom that I think so beautifully gets at how daunting this process of disclosing can be, especially when it's new.
Emily: [00:02:16] Hi. My name is Emily. I am very new to all of this. I got my son's testing back recently, and they give you this big stack of papers that's all his information. And I was absolutely paralyzed. I felt like I did not know what to do. I didn't know who to talk to, who to go to, what my next steps were. And the background on this is that I am also an educator, of almost 20 years. And I have taught kids with various learning and thinking differences and I always thought, "Well, if, you know, one of my kids ends up with an IEP or issues in the classroom, I'll be one of those great parents that, you know, takes a deep breath and knows exactly what to do.
And the fact was that I didn't, because it was my child. And I was scared and nervous and alone. And I just completely shut down. And I had the reaction that I didn't want to have, which was, "This is nobody's business but ours. This is our family. This is my child. Nobody needs to know about this, and — not nobody, like teachers need to know about this, right?” But not, like, general people. And that really shocked me and surprised me that that's sort of how I felt.
Amanda: [00:03:50] So we asked all of you how disclosure has worked in your family. And one dad told us he falls solidly into the Don't Tell camp.
Dad: [00:03:59] There are times when I will tell people, obviously, like teachers or people who interact with him heavily. But it's not something that I will say to someone up front. A lot of it has to do with the social stigmas that reside around the various things like ADHD, autism and learning disabilities that people have and how they interact with the people who have them. So I want my child to be treated as any other child is. And as a result, I don't tell people up front about it. So that they don't attach those labels to him. They may choose to avoid or shun him because, you know, “I don't want to have to deal with a child that has that condition.”
Lexi: [00:04:53] So clearly, decisions around disclosure are deeply personal for both parents and for kids.
Amanda: [00:04:59] Right. And on one end of this, you've got parents like the one we just heard from.
Lexi: [00:05:03] And on the other end...
Ayelet: [00:05:05] OK, so my name's Ayelet. I have three kids. My middle one, Leia, is dyslexic. She's currently 13, and she's in eighth grade. She loves anything expressive — everything from art to dancing, speaking — anything that allows her to express herself somehow is what she enjoys.
Amanda: [00:05:35] When we spoke to Leia's mom, she was at home in Staten Island. And she and Leia were both just getting over the flu.
Lexi: [00:05:41] Leia's dyslexia wasn't diagnosed right away, though Ayelet and her husband knew something was up during the first few years of school.
Ayelet: [00:05:48] So she was able to tell me everything about school: "Oh, in science we did this, then in this class we did that and this was so cool." And she would very happily discuss whatever she was learning. So we knew she was learning, but she was failing everything.
So it never occurred to me that she couldn't read. But it dawned on me one day when I came home and I saw she was attempting to do homework. I guess she was kind of -- my husband was home, and he was trying to help her with it. But what I had walked into was like a screaming match: "I just can't do it. I don't know what to do." And she's hysterical and he's, like, not yelling at her but, like, you know, that frustrated parent, like, "Just copy what I wrote down."
And I'm standing there and it was like, like, a moment where all time stood still. You know, I felt like I stood there for 20 minutes and it was literally three seconds. And I said, "Oh my God, my kid can't read."
Lexi: [00:06:57] And in that moment what, like, what did that mean to you?
Ayelet: [00:07:02] I think I had a lot of thoughts at the same time. I distinctly remember saying, "How could she make it to fourth grade and nobody picked it up?" And I'm a teacher. It just, I felt so upset, angry, you know, how could I not know? Things like that.
Lexi: [00:07:22] Ayelet and her husband took Leia to get an evaluation.
Ayelet: [00:07:25] And every item that identifies dyslexia, she hit it. She hit every single one.
Amanda: [00:07:41] But this isn't a story about dyslexia.
Lexi: [00:07:43] Right. That was last episode.
Amanda: This one's about how kids and their families figure out when it makes sense to share a diagnosis and when to keep it private — whether it's dyslexia or a different diagnosis. For Leia and her parents, the process of figuring that out started pretty much the minute they walked out of the doctor's office after getting the diagnosis.
Ayelet: [00:08:01] We live on Staten Island and we had taken her to Manhattan for the evaluation, for the neuropsych. Just where it was, we ended up taking an express bus. It was just easier than driving and finding parking. So we had like an hour bus ride home. So we were on the bus, and she was like, oh, you know, "I get it, but I'm really embarrassed." She's like, "Do I have to tell people?"
So I told her it was up to her. I said, you know, "There's positives to being open about it, and then there's maybe negatives, too. But you have to do what feels right for you, and you may want to keep it quiet for now and then later tell people." So she got very, very quiet and didn't say anything for a few minutes. She was just kind of looking out the window. And she said, "OK, I need to think about it." And I said, "OK."
Lexi: [00:08:50] Fast-forward a few weeks. Leia hadn't said much more about the diagnosis. She was just kind of doing her own thing.
Ayelet: [00:08:56] So she had been journaling for a while I guess. She had asked me for a folder. I got her folder. She filled it with paper and she would walk around the house, like, hugging it. And she would keep it in her room, and I just didn't question it. Because, you know, kids: stickers, papers, folders, you know. But after maybe three weeks, two weeks? I don't even remember. She's like, "Guess what?" I said, "What?" She goes, "I wrote a book." I said, "You did not." She goes, "No, I wrote a book. I really did." And I said, "OK, can I see?" She's like, "No. But can you type it for me if I read it to you." And I said, "Sure." So we sat at the computer. I typed, she read. And I'm sitting there, and I'm like, "OK, wow."
Amanda: [00:09:52] In those pages Leia and her mom typed up, she had written about her experience with dyslexia, and how what she understood and how she performed in school never seemed to match up for her.
Leia also wrote about what she was learning about dyslexia. And she wrote about how she could stick up for herself when her teachers didn't seem to get it.
Lexi: So Ayelet printed out the pages, and then Leia pasted them into a blank notebook and added illustrations.
Amanda: [00:10:15] And those illustrations are so cool. They're cartoons about her thought process. They're cartoons about what it was like to be in school — really neat. Leia thought other kids, kids like her, might like to read the book, and she asked her parents if they could publish it.
Ayelet: [00:10:30] So we decided to just go ahead and do it and see what happens.
Amanda: [00:10:36] And that's how Dyslexic Renegade was born.
Leia: [00:10:38] I'm Leia, 9 and in the fourth grade. I wrote this book when I found out I was dyslexic, because I thought there was something wrong with me — and there isn't.
I don't want other kids to think like I did. "Dys" means "difficulty" in Greek, and "lexis" means "words" in Greek. So all it really means is that one person has a hard time with anything that has to do with words. But it doesn't mean we aren't smart.
Lexi: [00:11:05] Leia's self-published book has had hundreds of downloads. She now hosts a Facebook page for kids with dyslexia that has over 10,000 followers.
Ayelet: [00:11:13] People started like emailing, messaging, calling, like on Facebook. People everywhere were like, "Oh my God, this is amazing, like, this is just like my kid!" And, you know, and we were like, "Oh wow. All right."
Lexi: [00:11:43] Hey, it's Lexi, and from time to time we're going to try something new on "In It." Starting now. The response to our show so far has been amazing. We're so grateful to you, our listeners, for the reviews you've left and the friends and the teachers you've told about our show. We love hearing that "In It" feels to so many of you like you're hearing your own family's experience described. So we want to share some of the incredible messages you've recently left us about our first episode: "Why We Cry in IEP Meetings."
Caller 1: [00:12:17] I get very emotional easily — very easily. And I can feel it coming on, and I'm always thinking, "No, don't do it, don't do it." I just can't help myself. I think a lot of the crying comes from a place of — see, I'm going to get emotional just talking about it. But anyway, I think I just get to thinking about my son and all the kind of "what ifs" and "what could have been." So sometimes that does make me a little sad.
Caller 2: [00:12:56] So at the beginning, I didn't cry at IEP meetings. But now at the end, I've been through so many that sometimes I can't help myself.
Caller 3: [00:13:07] Being an educator, I know, I know what to ask. I know what to look for. Even still, you know, I think about all the families who just go along with whatever is said in those meetings and don't ever feel like they need to question or really advocate for their kids because they really don't understand, you know, all of the lingo and all of the language and, you know, it can be intimidating even for me being an educator for, you know, over 15 years. So anyhow, it gets emotional. It sucks to feel that your kid's not being fully supported.
Lexi: [00:13:50] And one more thing: Since this episode aired, we've created a new Understood video with Dena Blizzard, the mom in Episode 1 of "In It." Dena talks more about her daughter's learning differences and the path to understanding that anxiety was at the center of many of her struggles. Check out that video at U.org/dena. That's the letter U, dot o-r-g, slash d-e-n-a. And now back to the show.
Lexi: [00:14:20] So as we've seen in Leia's case, learning how to share this thing about herself with other people happened really quickly. But Amanda, I guess I'm curious: Is that typical?
Amanda: [00:14:33] I don't know that it is typical. It's really amazing to me that Leia not only wanted to talk publicly, but she wanted to talk very publicly about it all of a sudden.
Sarah: [00:14:46] Hello. This is Sarah from Omaha. One time where we did not disclose information about my child's disability was with my middle son who was going off to college. We chose not to disclose his diagnosis as twice exceptional with ADHD and slow processing. He was able to get by in high school because of how smart he was. But once he got to college he really struggled. After failing English 101 twice, his self-esteem plummeted and we finally got him on medication and started with the disability services at his college. However, his last term as his freshman year came around, and he had an instructor who wouldn't work with his disability services that were put in place, and he ended up losing his scholarship. Had we disclosed his disability to begin with, I think that his freshman year of college would have been a completely different experience for him.
Lexi: [00:15:51] Wait. So Amanda, you send your kid off, maybe to college or to live independently or whatever, and you're still not out of the woods with disclosure stuff?
Amanda: [00:16:00] Nope. That's especially because that's the point when you're really passing the torch, if you haven't already. Because out in the world when your child's an adult, legally an adult, it's going to be up to them to figure out how and when to talk about these issues. And the question is, how do you do that?
Manju Banerjee: [00:16:17] Prepared scripts don't work very well.
Lexi: [00:16:20] Manju Banerjee is the vice president of educational research and innovation at Landmark College, a school specifically for students who learn differently. And she says going out into the world on your own brings a whole host of new challenges around disclosure.
Manju: [00:16:35] You are trying to present your best persona, if you will, to be attractive to others. And you're starting to think about life mate. You know, it's the adult stage of one's life. So at that stage, do I have to disclose? "Well, you know, I have learning differences," or "I process information slowly," or "I can take you to a date but I need more time to calculate the tip." It can be really embarrassing.
Amanda: [00:17:03] In some cases, Manju says, our kids may decide not to disclose. And we have to let them make that choice.
Manju: [00:17:11] I think one of the things we need to do and get talking about disclosure, we, as adults and educators, really need to put ourselves in the shoes of the young adult or the child and understand where that reluctance is coming from. And you can't force self-advocacy. You really need to create a safe environment where self-advocacy can be practiced organically and have successful moments.
Amanda: [00:17:43] So let me ask you a question as a parent. I can create the safe environment in my home, right? And I can create it around them. What do I do to make sure that they are ready to be in a world that may not feel as safe to them?
Manju: [00:17:59] I think as parents the hardest thing for us is to let go — is to let go that end of the rope, because we've created that safe environment at home. We know when to jump in and help out. But I think it's important for us to have that confidence, that I've built a solid foundation. And there will be occasions where my son or daughter will do things that are absolutely illogical, that make no sense, and that's doomed for failure, and just have to stand back and let that process happen, because that's how we learn.
Wilson Standish: [00:18:43] Let me just ping the group and see if I can push it back a little bit. So hold on, give me one second.
Lexi: [00:18:49] Wilson Standish has very much launched into his adulthood. He works in the advertising arm of Gimlet Media and if like me you're a podcast junkie, Gimlet probably is familiar. He spoke to us from his office between meetings.
Amanda: Wilson has dyslexia, but it's not something he shares with people right off the bat, especially at work. First, he says, he needs to build a relationship.
Wilson: [00:19:11] Definitely. Yeah, yeah. Because I don't want my first impression to be "dyslexic" for some reason.
Lexi: [00:19:18] Right. So it's not like you put it at the top of your resume as “special skills.”
Wilson: [00:19:22] No, no, not at all.
Lexi: [00:19:25] That said, once he's had a chance to build up some trust, he's OK if his dyslexia comes up organically.
Wilson: [00:19:31] It usually comes before I have to do a brainstorm with a group and write on a white board. And that's when I say it, and it's only after I feel like I've earned the trust of people, so they're like, "Oh it doesn't matter, we can trust him. He's smart, he does great work." And those are the moments where I feel comfortable doing it.
Lexi: [00:19:51] And what do you say?
Wilson: [00:19:53] You know, I kind of just say, like, "Hey, I'm really dyslexic," and I just move on. And I don't really, like, dive into it, because my hope is at that point that the work that I've done and I've produced — it doesn't even matter to them, the fact that I'm dyslexic. And it only comes up at times when I'm writing emails, and I'll totally miss something that, you know, can sound really bad.
Like one time, I was writing, we, you know, I used to run the Innovation Group and I was writing about a hackathon that we're trying to have with the company. So I wrote this email to like 30 people and the subject said "Hackathong." And everybody, you know, had a lot of fun with that. And it's those moments where, you know, it's embarrassing, but you — just by getting ahead of it and owning it, I've found, you know, that it's OK. And then knowing that I have to just work a little harder to make sure that I outshine those moments.
Lexi: [00:20:55] Oh Amanda, hackathong!
Amanda: [00:20:57] I know. We all make those mistakes, right? Autocorrect is our enemy at that, and we laugh. But if like Wilson you're someone with a learning difference, those moments can feel so much bigger.
Lexi: [00:21:09] Do you feel like you've been more forthcoming in your professional experiences than your personal life?
Wilson: [00:21:16] Yeah, I think so, just because, you know, in my personal life I don't really have to write in front of people or read aloud. And those are the moments that are kind of the most intimidating. It only really comes up now when I'm, you know, driving or giving directions and I mix up my left and my right.
Amanda: [00:21:34] I do that too.
Wilson: [00:21:38] Yeah. No, I don't really, you know, I don't really think about it as much. And I just, I guess, like, well I know it's present and I know I have to work through it continuously. It's something that hasn't necessarily, like, been a defining thing that I think about all the time.
Lexi: [00:22:02] Ayelet, can you tell us, what advice do you have for parents and for kids who are just starting to find their way when it comes to sharing their learning and thinking differences?
Ayelet: [00:22:13] Huh. I don't know. I think it's so different for everybody. For us it works to talk about it a lot, and often, and just put it out there because it is what it is. You know, when you talk about it, you are also teaching other people who may not be aware and people may show you their ignorant side. You have to not take it to heart.
Amanda: [00:22:45] Ayelet's right. Choosing when and who you disclose to is different for everyone.
Lexi: [00:22:49] Which reminds me: Remember Emily, that great mom who we heard from at the beginning of this episode? She was the one who was drowning under the pile of papers from her son's diagnosis. She was not sure if she wanted to tell anyone about it. So, she actually had more to say on this.
Emily: [00:23:06] So I've been taking baby steps, and I've had some really great friends help me, let me practice with them and saying, “Oh this is really helpful for him when he gets anxious, or this is a little thing that we do to help him in certain moments.” And it's felt empowering and made me feel less alone, and has helped him feel like he knows himself better. Because at the end of the day, this is really about him gaining the skills and confidence to move through the world, and I need to be there for him. Thank you so much. That’s it. Bye.
Amanda: [00:23:49] You know, as another mom who's done that, that's a big deal. Like she's not 100 percent comfortable she's ready to talk about it yet, but she's doing it for him. That's a big step.
Lexi: [00:23:59] So Amanda, I just love that Emily mentions practicing with a friend, which just seems like such a solid way of making this more comfortable for families. But I imagine that there are so many instances in which families have to make the call on the fly. And in some of those cases, do you maybe not disclose, period?
Amanda: [00:24:23] Yeah. I mean there are times — we heard from the dad in the beginning of the show who says he doesn't talk about this, and that's totally fine. There are all of these variations, right Lexi? I mean, Emily practices with a friend, but we don't know who else she's told beyond that yet. And that's totally fine.
Lexi: [00:24:40] And are there circumstances in which you still will keep this information private for your family?
Amanda: [00:24:46] I'm not telling you that.
Amanda: [00:24:56] You've been listening to "In It," a podcast from Understood for Parents. Our website is Understood.org, where you can find all sorts of free resources for people raising kids with learning and thinking differences.
Lexi: [00:25:07] We would love to hear how your family has tackled the disclosure minefield. Go to you U.org/podcast to share your thoughts and also to find free resources. That's the letter U as in Understood, dot o-r-g slash podcast.
Amanda: [00:25:20] And if you like what you heard today, please tell somebody about it. It's a way to start talking about disclosure. Share it with a friend or just a parent at your bus stop. You can also go to Apple podcasts and rate us, which is a great way to let other people know about "In It."
Lexi: [00:25:34] You can subscribe to "In It" on Apple podcasts, follow us on Spotify, or keep up with us however you listen to podcasts. Between episodes you can find Understood on Facebook, Twitter, Pinterest, and YouTube, or visit our website: U, that's a letter U, dot org.
Amanda: And come back next episode where we'll be talking about why math struggles can be so much more than anxiety about messing up your times tables.
Lexi: [00:25:58] "In It" is a production of Understood for Parents. Our show is produced by Blake Eskin of Noun and Verb Rodeo, Julie Subrin, and Julia Botero. Mike Errico wrote our theme music, and Laura Kusnyer is our director of editorial content.
Amanda: [00:26:11] Thanks for listing, everyone. And thanks to those of you who sent in voicemails and voice memos. And thanks to all of you for being in it with us.
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is the director of thought leadership at Understood and author of “The Everything Parent’s Guide to Special Education.” She worked as a classroom teacher and early intervention specialist for more than a decade.
Gretchen Vierstra, MA
is the managing editor at Understood and co-host of the In It podcast. She’s a former educator with experience teaching and designing programs in schools, organizations, and online learning spaces.