How an ADHD diagnosis was lost and found again (Nikki Daye’s story)

Nikki Daye, a school psychologist and ADHD advocate, grew up in the foster care system. She was diagnosed with ADHD as a child, but her medical records were eventually lost. As she got older, her ADHD diagnosis wasn’t considered. Instead, her symptoms were misdiagnosed as anxiety, PTSD, and bipolar disorder. 

While her ADHD diagnosis was “lost in translation,” Nikki spent a lot of time feeling misunderstood and unsupported. It wasn’t until adulthood that she finally got the clarity she needed. Now, she’s using her experience to advocate for kids with ADHD, including her own daughter.

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• 6 ways ADHD and PTSD can look alike

• ADHD and trauma

(01:18) Nikki’s first ADHD diagnosis as a teenager

(03:30) Nikki’s experience with echolalia 

(05:27) ADHD treatment, speculating other diagnoses, and medical records being lost while in foster care

(09:11) “Aging out” of her ADHD diagnosis, and coming back to it

(15:08) Nikki’s intersectional “aha” moments 

(20:33) Nikki’s work helping kids like her and her daughter

Nikki: I remember specifically, I worked with one lady, and she told me that she hated working with me, and she was like, "You are so aloof when I talk to you, don't make eye contact with me." And I could hear this woman, like I'm usually doing stuff, but I do hear things. But then I realized, oh, like people are noticing it's normal for me to have eyes and ears on everything, but I'm not actually looking at this person. So, it's like those are the things that I had to learn as a professional. In my head, I'm like, "Look at this person. Make sure that you're looking at this person. Nope, don't look at that. Stay here."

Laura: This is "ADHD Aha!," a podcast where people share the moment when it finally clicked that they have ADHD. My name is Laura Key. I head up our editorial team here at Understood.org, and as someone who's had my own ADHD "aha" moment, I'll be your host. I am here today with Nikki Daye. Nikki is a school psychologist who advocates for kids with ADHD. She's also a mom to eight-year-old Aleya, who also has ADHD. Nikki, welcome. I'm so glad you're here today.

Nikki: Hi, thank you for having me. I'm excited.

Laura: Let's start first by talking about when you were diagnosed with ADHD. When were you diagnosed?

Nikki: In my teenage years, I first had the diagnosis. It wasn't super definitive. It was kind of like, I think this could be what it is. But 20 years ago, there wasn't a whole lot of information as to what it actually was and what it looked like.

Laura: What was going on that led to that diagnosis?

Nikki: I have a significant trauma history. So, there was what I feel at the time was a lot of overlap between my trauma and my ADHD. So, difficulty concentrating, difficulty staying focused, as parents will always say, kind of into everything, starting something, and forgetting to finish. I was a very bright kid. I always did super well in school, but it was waiting until the last minute to study, cramming for hours, you know, just poor time management, which I still struggle with.

So, just seeing those things that look like what you would call a typical hyperactive, you know, disorganized child.

Laura: Who in your life noticed what was going on?

Nikki: I was in foster care at the time. So, it was going to the doctor with my foster family. My foster mom at the times was really big on getting me the help that I needed, getting me into therapy, getting me into my physicals. And so, she was the one who had noticed, you now, at home, I was just kind of all over the place.

Laura: Was there ever any talk with doctors or the school about like, are these symptoms of trauma that we're seeing, or are these symptoms of ADHD that we are seeing?

Nikki: No, there wasn't actually a lot of conversation about the possibility of overlap. When the idea of ADHD came up, what I remember, it was presented as if there was something wrong with me. Like I had something almost that needed to be dealt with, but the link to my trauma, it was never discussed as this could be the reason why, you know, she's behaving this way, or she's having trouble sleeping, or she is having these impulses. And that was very confusing to me. I actually didn't connect those pieces until much later in life when I started doing my own background research into what was going on.

Laura: I don't know if I'm pronouncing this right. You had or have echolalia?

Nikki: So, I do. It's more of the impulse, like my filter is obviously not filtering as well as it should be. And so I, especially if I'm not medicated to this day, I will hear someone say something, and I will repeat it out loud before I even have a chance to realize that I've done it. I might hear a mom talking to a kid, and she might say, you know "Caitlin, stop it." And as I'm walking by, I'm like, "Caitlin, stop it!" Like, oh, my God, why do you do that?

Laura: Oh wow.

Nikki: You're so weird. And so, I've had to apologize a lot in my life, sometimes. I am so sorry.

Laura: And that was something that happened when you were a kid as well.

Nikki: It was, yes.

Laura: In my very, very brief reading, it seems like there is a potential connection to ADHD, that it can be kind of like a self-soothing behavior, a repetitive behavior. Is that aligned with your understanding?

Nikki: Yes, and sometimes I will say them out loud. But there's other times, like the end. So, one specific thing I can think of because it drives me nuts. The phrase "black forest ham" got stuck in my head for probably an entire day. I could not stop saying it. I could not. And even though I managed to stop vocally saying it, like in my head, it was just on repeat. It was like the more I tried to not think about it, the more I thought about it, and it was all day. It was just black forest ham, what does it mean?

Laura: Kind of random, but also very interesting. And it's like a nice array of syllables there too.

Nikki: Yeah. But then it became like, when you talk about self-soothing, it just became like part of this background noise in my head that just kind of like kept replaying for some reason.

Laura: Yeah. Yeah.

Nikki: So, it just becomes like the background soundtrack to my day. These weird words.

Laura: Oh, that's really interesting. So, when you were diagnosed as a teen, were you receiving any treatment related to ADHD?

Nikki: I had started taking medication. I was in therapy also, but like I said, I was in foster care at the time. So, things kind of, you know, they moved along and they got lost in translation. There was just a lot of playing with medication, trying to figure out how we're going to treat the ADHD. But then, is it depression? Is it anxiety? And as I got older, it was like, oh, is it OCD? Is it bipolar? And it just turned into a lot of A, making me feel bad about myself, and then B, just different medications and try this and adjust that, and it becomes very difficult when you're trying to be a working adult and then a mother and a professional. It just gets very, very exhausting.

Laura: You used the term lost in translation. Can you tell me a little bit more about what that means when you're in foster care and you have a diagnosis or treatment needs?

Nikki: Yeah, so a lot of my medical records were lost.

Laura: Oh, wow.

Nikki: From a certain period of time, I couldn't even tell you who I was before. I don't have access to those records. The interesting thing is I lived in one county, but being an athlete, I played basketball at a private school in a different county, and so, I got placed in that county to be closer to school, but my original group home placement was in a county in the other direction. So, between all of that and I moved foster homes a few times. By the time I was exited from the system, I can't even tell you where my medical records were. I can tell you anything about my past. I don't, other than my memories, I don't have anything.

So, then trying to go back and explain as an adult, I think I had this, "I think this is what I was on," and then being, when they're asking you questions, you're like, "I really don't know." It was just starting all over from scratch again, basically in my early 20s.

Laura: That's frustrating.

Nikki: Yeah, it was hard just trying to explain again and hold all of those things, right? And then having trauma on top of it, so you're having to constantly re-explain what's going on with you, and then doctors have their own opinions.

Laura: Yeah.

Nikki: You know, so it's like "Well, that doesn't sound like ADHD. This sounds like you know depression or this sounds like you have PTSD from your trauma, so let's go this course of action," only to end up right back where I was. It was incredibly disheartening. I wish I knew more about who I was back then, but I feel like part of that journey brought me to this understanding of who I am now. And I'm OK with that because I work with youth that are in foster care, homeless, that have been trafficked, all of these things. It's like, I understand now. Trying to get those medical records, trying to get your birth certificate, trying to find the doctor and your insurance cards.

So, I have a very unique perspective that allows me to help support and advocate for the student population that I work with now and even their parents, that reunification part, and they're getting their kids back from the system and then trying to learn how to navigate it. So, it actually does give me a very unique perspective to be able to work with these families and say, "Hey, I've been there. You know, try this kind of thing, and this is what I did. It helps really allow me to connect with those families. They're lucky to have you.

Nikki: Oh, thank you.

Laura: Without a doubt.

Laura: When we chatted in our pre-interview, Nikki, you used the term aged out. You said you aged out of your ADHD diagnosis. I'm wondering if we can dig into that, and what happened after high school, and this kind of alphabet soup of diagnoses, and eventually coming back to this ADHD diagnosis that I think felt right.

Nikki: Yeah. I ended up staying with the foster family that I was with. They became my family. And then it became, you know, just the late teens, early 20s, I'm an adult, I do what I want. And so, I did that for a little while. It was chaotic. It was very unfulfilling. I mean, I was in school. I was playing basketball. I was carrying 19 units, and I was jamming along, but I didn't realize how much I struggled with keeping a job, time management, getting to where I needed to be.

I was almost kicked off the team for being late to practice all the time and just not understanding why life was so difficult, just thinking this is just kind of par for the course, right? Like this is adulthood, and adulthood is hard, and you just learn how to manage.

I do credit myself with having a lot of grit and a lot of resiliency, and just like, "I'm gonna put my head down and I'm going to keep moving." But, I got to this place of burnout to where I was like, "This isn't even worth it anymore." You know, just all of these doubts, like I suck socially, I suck professionally. The only thing I'm really successful in is basketball. And even like my relationships with my teammates are strained because I struggled with like that connection piece. And it's, you just get tired. I really was just tired, like. I remember crying all the time, like what is wrong with me?

And I started going back to therapy, which definitely helped me unpack some things, right? Can't pretend like trauma is not a thing. That was huge. But then it was that road of let's start trying medications again.

Laura: About what age was this, Nikki? I'm sorry.

Nikki: I was 22, and I realized I was at a very pivotal moment because I was a 911 dispatcher. And you cannot, you cannot just be all over the place when you're trying to save people's lives.

Laura: Wow, what a job.

Nikki: Like, you have to be able to concentrate, right? I was really good at the job because it requires a lot of multitasking, and it requires you to, when everything else is on fire, you have to be not. That's totally my brain's jam. I can do that, but I hit that point of burnout. At the time with my therapist suggesting medication, I had a very negative reaction to it because in my head, medication made me crazy. And I was like, "I'm not crazy. You know, I can manage this on my own." There was just so much negative stigma around mental health, and even depression and medication.

My sister has depression, but her depression looked different. I was thinking, "I don't look like that," you know? So, some of the labels getting thrown around, like the first time I had my doctor tell me that they thought I was bipolar. I mean, you probably could have told me something like I had cancer. I was just like, I, how, the internet is the worst place you can be. And now I'm looking at bipolar, and I'm like, "But I do do that. And I do, do that."

Laura: What were they noticing that led to that?

Nikki: What I had tried to explain at the time, which I guess could sound like bipolar, is one minute I'm happy and the next minute I am not. One minute I'm fine and I'm getting things done, and then the next I'm lying on the ground in my room crying. Which is true, but in context, I'm exhausted. I've burnt myself out all day. I'm not sleeping. And I've got all the demands of adulthood. And yeah, now I'm lying on my floor crying, wondering why I've left the water running when I'm trying to make juice, and I left the door open and this unlocked, and I feel like a complete failure at the end of my day.

And then experiencing like those highs that come with the good mood and with getting things done and with checking things off my list. And sometimes like that impulsivity, you know, creates kind of like that manic high too. Like I'm doing things, and like, yeah, life is great and this is fun. And then reality hits, and you come down off of that. So, not knowing how to explain it. Yeah, I could see, you know, that's sounding like bipolar.

Laura: Yeah. You ended up at one point, I think you had told me when you were 24, then telling your doctor you had this previous ADHD diagnosis. What was her reaction when you told her about this previous diagnosis? Was she like, "Oh, duh?"

Nikki: Confusion.

Laura: Confusion? OK.

Nikki: Yeah, as to why it hadn't come up before, again, there were a lot of unanswered questions, but then also trying to explain where people are like, "You don't typically see ADHD in adulthood. That's not normal." That was something that I got pretty often.

Laura: Which is not true, yeah.

Nikki: "ADHD is for kids. You're not a kid." And my doctor was like, "No, let's try this. You know, like let's address this." And when I got back on that medication, it was definitely an eye-opening experience. And that is what made me start doing even more research into where I was as an adult. And then all of the other little like nuances, like I'm an adult female, I'm an African-American female, like, what does this look like for me? And then at this point now, I'm finding more and more stories of people like me, my age, that look like me telling their version of their ADHD journey. And how it's impacting them in the workplace. And so, it was just like, "Oh, I've arrived."

Laura: Tell me about these realizations. These may be, dare I say even, ADHD "aha" moments around race and ADHD, and gender, that intersectional story. What were you realizing?

Nikki: That there is so much overlap between trauma and ADHD in like our Black-brown communities is like one of the biggest takeaways that I've learned. And sometimes a lot of misdiagnosis around, is it trauma, or is it this? When you have so much comorbidity between the symptomology of just realizing that it doesn't have to be all or nothing, realizing that sometimes characteristics that are more attributed to Black-brown individuals are actually indicators of something deeper that get overlooked and are misunderstood, especially with our young children and their experiences.

There's so much pressure, first of all, as a woman, to be women and be professionals and not be emotional and you know all of these things but then I feel like being a Black woman or a person of color, a minority complicates being a woman because you have to learn to code switch appropriately and you have be cautious about too much base in your voice, you know being too confrontational and again a lot of these attributed to women, but sometimes unfairly attributed to people of color and minorities. And so, there were a lot of times I felt like in my professional career, I was misunderstood and mislabeled.

Like I remember specifically, I worked with one lady, and she told me that she hated working with me. And she was like, "You are so aloof. You just don't listen. When I talk to you, you don't make eye contact with me," you know, all of these things. And now being older, I realized, man, there are so many things like that I could have been on the spectrum, and you're mad because I'm not making eye contact.

Laura: Yeah. Yeah.

Nikki: But for me at the time, I do struggle with social interactions and like knowing what's correct. But then also those things of like, if I'm looking at you now, am I being too aggressive? Am I being confrontational? You know, so, I'm trying to figure out as a person, as a woman, and then being a Black, like how do I act less confrontational? You know, on top of that, now my ADHD is like, "Look at this lady stapling this paper. Oh my gosh, that person's going to spill their coffee. I hear this kid crying back here," and I'm trying to juggle all of these things. And I could hear this woman. Like I, I'm usually doing stuff, but I do hear things.

So, it's not like I was ignoring her, but then I realized, "Oh, like people are noticing that I'm doing these things, even though it's normal for me to have eyes and ears on everything, but I'm not actually looking at this person, but I hear you. So, it's like, those are the things that I had to learn as a professional that sometimes even in my head now, medication or not, in my, head I'm like, "Look at this, person, make sure that you're looking at this person. Nope, don't look at that. Stay here," like I have to just in my head because yeah, medication is great.

Whether you choose to take it or not, medication isn't the end-all be-all. And so you still have to learn as an adult how to cope with these things as part of ADHD, and everybody has their own tips and tricks. But for me, it's like that constant trying to stay present. Like even if I'm going from one room to another one, I'm like, you know, "You're taking this to the washing machine, go to the washing machine, go to the washing machine. Go to the washing machine." I just have to keep going, and that's medicated or not, you know, sometimes I'm successful, sometimes I am not.

Laura: That's a lot to carry, and like all of the different ways that, like you know, how your brain is working and how people may be perceiving you. All those hoops you have to jump through, even before you say a word.

Nikki: Yeah, and I don't think people understand sometimes, right? Because you can't see it. I hide sometimes in my office and I will wait till I like don't hear anybody in the hallway. My goal is like, "Get to the printer, you printed this report," and this is like a, you know, time-sensitive thing. And then someone stops me and they're like, "Hey, do you have a minute? I meant to talk to you about this kid." Now I'm like "Crap. Don't forget the printer, don't forget the printer."

Laura: Oh, my God. That happened to me yesterday.

Nikki: I'm trying to make eye contact with this person, right? Because it's stuck with me what that lady said. And I'm like, "OK, don't be aloof. Like, don't be a jerk. You know, talk to this person." So, I'm trying to genuinely be invested. And in the back of my head, I'm like, "Don't forget the papers on the printer, don't forget that you have to pee. Don't forget the papers on the printer, don't forget to pee," and I'm trying to still be engaged. And they're like, "Oh, this kid, and this, that." You know, so there's just so many things, and I don't have like a notepad.

Laura: Right. Yeah, no, that happened to me yesterday, Nikki. Somebody was like, "Oh, I want to show you something." And he was so excited. And I was like, "Oh my God, I need to text the babysitter. I was just about to text a babysitter, what was I going to text the babysitter?" and I was "Smile, smile, look at the video he's showing you."

Nikki: Yes, see? Do normal things. I tell myself Do normal people things. Do normal people things.

Laura: Don't act like a jerk.

Nikki: Do what normal people do right now.

Laura: Tell me about how your experience in general, and then specifically how your ADHD paints the work that you do.

Nikki: I think it gives me a different level of understanding and compassion. I'm constantly looking for new ways to relay what is happening to the students that I'm advocating for, to the parents or the caregivers, trying to explain some of their world so that these individuals have just a tiny understanding of what it is that this student maybe experiencing throughout the course of their day, that makes them just put their head down. That makes them want to ask for water for the 20th time. That makes them cry when you give them a paper with a hundred problems on it. Because I want to cry when I see a questionnaire with all of these things.

Laura: Yeah.

Nikki: But realizing that sometimes simple things like covering half, these things can make such a huge difference for our students. And fighting some of the pushback where it's like, "Well, they should be able to do that." Yeah, "Well, I should also be able to walk from my room to my kitchen without doing 10 other things, but I can't, so like let's narrow this down."

And sometimes I have found that being transparent about my own journey makes people more inclined to listen, as far as like "Here's what I'm experiencing. Let me explain this from an adult standpoint, right? I'm an adult with 20 years of experience. This is a child. This is an eight-year-old. This is a five-year-old. That doesn't have the coping skills or the social-emotional training that I do, and I'm struggling. I'm telling you, as an adult, there are times I go home and cry. So, your child crying during his homework is the equivalent of me, as a 38-year-old adult crying, typing this report, because I am so visually overwhelmed and I'm mentally exhausted," trying to get that to translate.

But then, in working with my own daughter, her ADHD journey is so different than mine. We do have some similarities, but what she needs is different than what I need. And that was my biggest "aha" moment as an adult with a child, is realizing that even though she couldn't explain to me what was happening, I was trying to manage her the way I managed me, and that was making it so much worse for the both of us. I've learned how we organize is different. Like my boxes have boxes. I will organize my containers. She can't do that. So, we've learned the art of dump bins, which drive me crazy, but serve a perfect purpose for her.

Laura: Wait, what is this? I need this for my daughter.

Nikki: So, like, if I organize, like say her Barbie stuff, I'll have Barbies, I have Barbie clothes, I'll have Barbie shoes, I will have Barbie, like I have to be very organized. My kid can't do that. It's too overwhelming to sort all the little things. So, she now has a Barbie box. So, we call them dump bins. So, she has her days to empty her bins. But if her bin gets full, as a rule, you now have to take that bin and empty it. Because once it's full, it starts to be too overwhelming for her. So, if her shoes are full, cause she likes to take her shoes off in the same place, go take your shoes to your room, and she has her bin. So, she just carries it.

Laura: Great idea!

Nikki: You know, it's not like back-and-forth trips where she gets distracted, just pick up the whole bin, take it, bring it back. They serve as visual reminders for her. I noticed when she got in the shower, she took her clothes off and she threw them in the place. So, I was like, "Forget it." I just took a bin and I put that bin in that place. Cause I was tired of telling her, "Pick up your clothes, put them in the laundry hamper," every time. Now she just throws them in the bin, and I've never had to say anything again. When the bin is full, take the bin, dump it in the washing machine.

And now it's like, she has that system that works for her, even though it's not my system, but I'm an adult. So, it's whatever lessens that battle. So, her morning is like, you wake up, but instead of being like "At 6:05 you do this," she's got between 6:05 and 6:30, "These are the things that need to be done. How you do them? Don't care. Which order? Just do them." That's it. So, it's like she's now learned how to monitor time. Alexa's our best friend. So, she'll know "I've got 15 minutes to do these things. Alexa set my timer." This is what I want for her.

I mean, eventually, she may try medication as an option. But like I said, even for me, medication's not the end-all be-all. She needs these tools to be able to manage life. Because sometimes you forget medication. Sometimes you run out of medication. Sometimes you may not want to take medication. You still have to learn to be able to function. And so, for her and for my students, these are the skills that I'm trying to teach them, as well as caregivers and parents, to say what they're experiencing may not look like what you're experiencing. And sometimes it's OK to meet your kid halfway and say, "If this is what you need, I don't care if this was our third laundry bin, if this what eases your brain or the frustration? Who cares? It's an extra laundry bin."

Laura: You've had quite the journey, and to be in a position where you can have this relationship with your daughter and with your students and be able to take all of your experiences and just help them find ways to thrive in like little ways and then in big ways. You're making such a huge impact on so many people's lives. I'm so grateful that you are here with me today. Thank you for spending this time with me.

Nikki: Thank you so much, this was amazing. I appreciated it, and I needed it.

Laura: Me too.

Thanks for listening today. As always, if you want to share your own "aha" moment, email us at adhdaha@understood.org or send a message to our voicemail inbox. You'll find a link in the show notes along with resources and links to anything we mentioned in the episode.

This show is brought to you by Understood.org. Understood.org is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. If you want to help us continue this work, donate at Understood.org/give. "ADHD Aha!" is produced and edited by Jessamine Molli. Say hi, Jessamine!

Jessamine: Hi everyone.

Laura: And Margie DeSantis.

Margie: Hey, hey.

Laura: Samiah Adams is our supervising producer. Video is produced by Calvin Knie and edited by Alyssa Shea. Our theme music was written by Justin D. Wright, who also mixes the show. Briana Barry is our production director. Neil Drumming is our editorial director. From Understood.org, our executive directors are Scott Cocchiere, Seth Melnick, and Jordan Davidson. And I'm your host, Laura Key.