229. Navigating OCD, ADHD, and Autism: A Personal Story with Erica Hackworth 

Carrie: Welcome back everyone to our personal stories series on the podcast for this summer. I know that all of you really enjoy hearing from other people who are struggling with similar best that we’ve gotten on the podcast is to talk a little bit more about intersection of different types of neurodiversity, so intersection between OCD and ADHD, intersection between OCD and autism.

Carrie: So today we have a personal story that really encompasses all of those diagnoses with Erica Hackworth. Welcome to the show. I’m so glad that you’re able to join us today. Thank you so much for having me. Tell us a little bit about kind of like your treatment journey, kinda what caused you to first get into treatment for ADHD, and how did this kinda lead to finding out about other diagnoses?

Erica: Yeah. I was diagnosed with ADHD when I was in elementary school, and I was treated for it all the way up through college, and then I went to a church and participated in biblical counseling where they basically told me it wasn’t real. Wow. I was on other meds too for depression and other things, but I got off all my meds.

Erica: Was actually doing okay for a while.

Carrie: I was coping okay. Do you think that was because you were out of school? Like, when you were in school and you had certain expectations that you had to meet, then having the ADHD medicine kinda helped you meet those expectations, and then getting out of school, maybe you didn’t need it as much, or?

Erica: I think to a point. Maybe in high school it was like that, but then college, like, I actually never graduated because everything fell apart. Like, I couldn’t just rely on my intellect anymore. I had to be able to do the executive functioning, planning, writing papers, doing those things, and I didn’t have the structures I needed.

Erica: Plus, I had a depression, a lot of other things going on that caused my life to fall apart. So yeah, I don’t know about that.

Carrie: This biblical counseling, though, that created a lot of shame then, I would imagine.

Erica: I think confusion too. Initially, it was kind of like, “Oh, well, there’s nothing wrong with me.” I was told for a really long time that I have all these things, like, it’s not real.

Erica: And so I think initially it felt like a blessing and like it was freeing, but then as time went on, I realized I think there’s actually something to all of this. Where I got married, I had my first child, and then my second, and then my third, and the stuff that I used to rely on to cope and keep everything together just totally fell apart.

Erica: Like, I couldn’t just get through the way I was getting through before. About a year ago, I started to kind of revisit the idea that maybe there is something to this ADHD thing. I think particularly because my husband and I were having difficulties. I would forget all manner of things. He kind of felt like it was personal, like I didn’t care.

Erica: I was like, “No, I do care.” And so that’s kind of what caused me to be like, “No, this is real. I’m not just a lazy, forgetful, horrible person. There is something going on neurologically.”

Carrie: I think that’s huge. I just wanna pause there for a moment, because it’s so hard sometimes to communicate to other relationships in our life, like, what our internal experience is like, and it, things can be misperceived.

Erica: It was so hard. The amount of times that I heard him say, and he meant well, but he was like, “I don’t understand you. My experience is nothing like what you’re describing.” For a while, that made me feel pretty alone, but then that was the impetus to be like, “Okay, so let’s help you. How can we help you understand what I’m dealing with?”

Erica: I had gotten some coaching back in my 20s from the ADHD Center of West Michigan. If you’re in ADHD circles, that’s Tamara Rosier’s group. I went back there and decided that relationship coaching was gonna be a good way forward to help my husband kind of understand what was going on. And then kind of in the background, I’m, like, on neurodivergent social media now, kind of, ’cause I’m trying to educate myself.

Erica: There was a video that came up that was like, “You might be AuDHD if blah, blah, blah.” It was like, you think about social interactions for days after they happen, and you feel, like, drained after spending time with people even though you love it, and all of these things. There were more things to it, but I just remember, like, the bottom dropped out.

Erica: I watched that and I was like, “Oh.” So it might not just be ADHD. ‘Cause I felt like ADHD fit who I was, but, like, not 100%, ’cause there was this other part of me that’s pretty routine oriented, pretty regimented, pretty structured, like things just so. I do things the same way every day, that kind of thing. And so that’s where I think the autism kind of

Erica: That was the other thing that kinda clicked into place, like, oh, okay, so it’s not just ADHD. It’s probably AuDHD. I better seek out a diagnosis for these things, just to kind of help me understand myself, help my husband understand me, and chart a way forward.

Carrie: I think with some women getting diagnosed later in life, like, their experience looking different than maybe a male autistic experience, can you talk a little bit about that?

Carrie: Like, oh, I think a lot of times when people think about autism, they think about people who are severely impaired, for example, or-

Erica: Or they’re thinking of someone of what the stereotypical Asperger’s kind of male guy looks like, who’s very high intellect, but just kinda socially awkward. This, I think, it looks different.

Erica: I think as women, we’re kind of socialized early that fitting in is survival. I learned over time, if I’m gonna stim, I’m gonna keep it small. I’m gonna keep it internal. I’ll stim with, like, my tongue around my teeth or, like, my hand in my pocket or things like that. And I learned to work really hard to appear like everybody else.

Erica: I can pretend to make eye contact. I really look at your nose or middle of your forehead or your chin, things like that. Or, like, if I’m in a situation where I really wanna rock, but I know it’s … Other people are gonna look at me and think it’s weird, maybe I’ll resist doing that. But all of that masking builds up, and it gets exhausting.

Erica: And you don’t really ever feel like anybody really knows you.

Carrie: Does it create a lot of internal anxiety and tension, just kind of like trying to almost fit this square peg in a round hole? Like, I don’t really quite fit in here, but I’ve gotta pretend like I do and be just like everybody else. Absolutely.

Erica: It’s pretty painful. And I remember in high school feeling like this just immense sense of loneliness, and it, that carried with me for a long time, just feeling like nobody knows me And if they find out, then they’re gonna realize that I’m crazy or weird, or they’re not gonna love me.

Carrie: Tell us about that process of then when you did get the autism diagnosis, what was that like for you, or how did that shift your self-perception?

Erica: I think it really helped a lot. Initially, it was kind of like, “Okay, what do I do with this?” Like, I’m still the same person. But I think what it really did for me was to realize that the things about me that I felt were too sensitive, too needy, like, “Why am I reacting like this? I should just be okay.” For example, my husband and I just traveled in an airport, and instead of having a big meltdown that was very mysterious to me, ’cause I would always meltdown on travel days, and I didn’t really get it.

Erica: I was like, “I’m just a difficult person. I’m really annoying. My husband shouldn’t have to deal with me,” which is also kind of some OCD thoughts, you know? But, like, instead of doing that, I wore headphones, and I was able to communicate to him and say, “Hey, listen, I’m struggling with all of this. I need a few minutes.

Erica: It’s not that I’m upset with you. This is a lot.” And so I allowed myself to accommodate myself. I wore headphones the whole day, even in the car on the way to our Airbnb, because the overstimulation was too much, and it prevented me from becoming a meltdown-y rage monster.

Carrie: That’s good. They also have these things like sunflower tags or badges, something like that.

Carrie: Have you seen those for airport workers? I’ve seen them.

Erica: I haven’t utilized it, but I’ve seen it. Yeah,

Carrie: for anybody out there that may be struggling, it’s to identify someone who has a invisible disability such as autism, or it could be used for OCD. Maybe airports really spike all of your OCD symptoms or other things.

Carrie: So people can, the airport workers can kinda know to treat you with a little bit more gentleness or understanding that, understanding that people may need more time and so forth when they see the sunflower badge. That was something that I saw last time I traveled in the airport that I thought, “Oh, this is really wonderful to have out there,” because my husband walks with a cane, but for a long time he just had vision issues, and people wouldn’t realize that he couldn’t see them in his side line of vision.

Carrie: And I thought, “Wow, that would’ve been really helpful for us to have some kind of communication like that.” He’s struggling, kinda watch out a little bit. Tell us about now when you have these sensory needs, it sounds like you’re able to accommodate a lot more for them. Like, how have certain things changed for you in your relationships, like within your family or friends, or just kinda day-to-day life?

Carrie: What does it look like differently now that you’re aware of this diagnosis?

Erica: Yeah, I think I have been able to communicate effectively to the people in my life about the diagnosis, and they expect me to have headphones on. They expect me to need to take a minute if I’m feeling overstimulated or overwhelmed.

Erica: I can say the word meltdown, and they know what that means. I think it’s just, like, deepened my ability to trust the people that I love dearly because now they get it. And it’s not that I’m difficult or bad like I believed for so long. It’s that I have a different sensory profile, and I process the world differently, and that’s okay.

Erica: It doesn’t have to mean anything bad about me.

Carrie: Yeah. So how did OCD show up? Like, when did that kind of come onto the scene or into your awareness?

Erica: Yeah. I have always thought I’ve been a very spiritually sensitive person, and conservative Christian circles where I kind of run around, that’s a very good thing, right?

Erica: It’s good to be sensitive spiritually. But as I was kind of uncovering the ADHD and the autism and starting to kind of lean into my special interests and, like, realized, oh, I don’t just get obsessed with things, and it’s not idolatry. It’s a special interest. It’s something that I find regulating, and it’s okay that it’s regulating.

Erica: As I started to kind of do that, I started to feel some immense guilt because I would spend a long time researching certain things for a while. Autism was my special interest, so I was, like, researching, researching, researching, trying to figure everything out. And I would spend hours, and then I started to feel like, oh, but I don’t read my Bible that long, or I don’t pray that long.

Erica: Maybe God’s mad at me for doing this. Maybe I’m sinning. Maybe I’m this, that, and the other. I mentioned that to my ADHD coach. She was kind of like, “Have you ever thought about OCD?” And I was like, “No,” ’cause I’ve had friends with OCD. Mine doesn’t look like theirs necessarily. But after that session, I did a couple self-tests, and I was like, oh, highly likely.

Erica: Great. Okay. Another diagnosis that I need to pursue. Let’s see here. So I went back to the place that I got diagnosed and said, “Hey, can we do OCD testing?” And they did, and it came back positive, and severe, actually. I think realizing that OCD doesn’t always look like symmetry or germaphobe or these other things.

Erica: It can be excessive thinking, excessive apologizing. It can be checking the relationship. Are we okay? It can be, for me, it was also, like, I had to do my devotions in a certain order, and if I didn’t do it in a certain order, it didn’t feel like God would be happy with that. Like, it’s not okay. It’s not done enough.

Erica: Or if I didn’t write down my prayers, then they weren’t real, things like that. All of these things felt very much like a prison for a really long time. And I just didn’t even know that I was living in it. It was kind of like I just thought I was sensitive and a nice person, ’cause I always wanna make sure everybody’s okay.

Carrie: That really, like, inhibits your relationship with God if you feel like I have to write down all of my prayers. I mean, that can be time-consuming, and then it doesn’t give you any kind of freedom to just say, like, “God, I need help right now,” or, “I just need some sense of comfort or peace or reassurance that you’re here.”

Carrie: Yeah, so it’s interesting how these symptoms overlap, right, with the autism of wanting the craving for, like, structure and routine and things being the same, and then the overlap of OCD saying, “No, it has to be this way, or else something bad is gonna happen, like, if you don’t do it.”

Erica: And then I think also with the ADHD in there, too, I have very much, like, flighty thoughts, right?

Erica: They all feel like hot air balloons that just kind of float away. I think sometimes I do crave that concreteness of thought in order to kind of keep a train going, which is not a bad thing, but when it becomes a necessary thing in order to feel like I’m okay,” that’s where I think it becomes more prison-like rather than a tool to help.

Carrie: Right. Tell us about your experience with inference-based cognitive behavioral therapy, ICBT. What was that like for you?

Erica: It was life-changing. I actually just graduated, and we did the Y-BOCS again, and I’m subclinical now, so that’s really cool. Um- That’s awesome.

Carrie: Yay.

Erica: Yeah, I went from severe to subclinical, so I’m praising the Lord every day for it.

Erica: I really appreciated learning about how OCD functioned, how the patterns of thought, what they looked like, what they sounded like, and I realized that so much of my shame and my fear and my sensitivity was actually just this, like, yucky, faulty alarm system in my brain that was telling me I was in trouble all the time, that something bad is gonna happen.

Erica: And understanding the patterns behind the thoughts helped me to realize, like, I don’t have to enter the bubble. I can make a choice now that I know what this is to go the other way and trust what’s around me, trust myself. I think that’s been one of the biggest thing, is that I’ve learned to trust myself.

Carrie: When you say trust myself, like, you’re talking about, like, my true intentions, my true desires spiritually, like, those types of things.

Erica: Who am I as a person, right? Who did God make me to be, especially now that I’m His child? I can trust that I have remaining sin. I don’t have the reigning sin. I don’t have the sin that I’m enslaved to anymore, which is such a freeing thought.

Erica: I think, too, because of the other neurodivergence, I have struggled to socially trust myself. A lot of times when I was younger, something would happen that I was completely bewildered by. Somebody rejected me, and I had no idea why, and so I think I made these rules of like, “Oh, it’s because I’m bad. It’s because I didn’t care enough about them, or they didn’t think I cared enough about them.”

Erica: And so realizing that, like, I can trust myself now in a social setting, I can be myself and it’s okay, and I don’t have to constantly be scanning for renet- relational, like, danger anymore.

Carrie: Right. That’s really good, and I think very helpful ’cause that causes you to be in your head and be disconnected from the people that you’re trying to connect with in that moment.

Erica: Right. And never quite feeling like you can do it right. Pretty isolating. So it sounds

Carrie: like that the feared possible self versus the real self, like modules, those concepts were really helpful for you. The OCD bubble, like if I understand kinda how I get into this OCD reasoning process, then I can know, oh, hey, I don’t have to follow that train of thought, like when that obsession comes up.

Carrie: That feels really good. Yeah. I even

Erica: started to recognize what OCD feels like in my body. I often would have this, like huge knot in my stomach that basically lived in my body for 30 years, and I thought it was a sensitive conscience and the Holy Spirit talking to me, and it’s not. Basically, this nervous system reaction of fight or flight all the time.

Erica: And so once I was able to distinguish the difference between, like the Holy Spirit convicting and OCD condemning, and really make that difference clear in my mind, I could recognize that that bodily sensation was imaginary, too. It’s happening, but it’s not based upon a spiritual reality. It’s not the Holy Spirit convicting me.

Carrie: Was that a hard thing to recognize? I think I’ve talked to different people where they’ve said separating that out, the Holy Spirit- Versus OCD has been challenging for them, as well as going, “Wait a minute, I thought that I was constantly being condemned or corrected, and now I’m having to learn this new way of being with God.”

Carrie: Like, what was that process like for you? It

Erica: was kind of the last domino to fall with the OCD therapy. I suddenly had this realization, ’cause I started engaging again more into my special interests. I’ve been in autistic burnout, and so one of the things that helps with that is really leaning into those special interests.

Erica: Well, as I was doing that, I started to have that gnawing sensation in my stomach, and was like, “Well, maybe this is the Holy Spirit.” And then it, it just kind of occurred to me, like, what does Scripture say about how the Holy Spirit operates? What does condemnation in the life of a believer look like? It’s gone.

Erica: I think it’s been really freeing to have a relationship with God that’s based upon love for Christ, love for His Word, love for truth, and not based upon, “I’m afraid He’s mad at me. I’m afraid that God hates me. I’m afraid that I’m a bad person and not successful as a believer,” those kinds of things.

Carrie: It sounds like just this concept of this verse that talks about perfect love casts out fear, because fear has to do with punishment.

Carrie: And so if you’re able to connect with God is loving, what I see in the Scripture is God speaking to people in a still, small voice, that not a loud, booming, “You have to do this right now,” urgency level of OCD. I think that’s a huge distinguisher for people, right? Like, oh, OCD gets really loud and really urgent, and I have to do it absolutely right now and perfectly.

Carrie: It’s true.

Erica: I think the other thing that I recognized is that OCD often can be very ambiguous, so it’s a lot of like, “You’re bad. Something bad’s gonna happen. You’re a terrible person. You are a bad mom. You’re a bad wife.” When it’s the Holy Spirit, it’s, “I’m convicting you about this thing.” It’s specific, it’s targeted, and it’s not based upon who I’m as a person.

Erica: My personhood isn’t on the line anymore. It’s, “I want to sanctify you. I’m going to grow you. I’m going to make you look more like Christ.” And it’s a beautiful thing, and it’s a gentle thing. Sometimes there’s chastisement and stuff like that, but I feel like in the life of the believer who really loves God, I think it’s gonna be a more molding kind of movement, rather than, like, He’s gonna tear me apart and I’m gonna get struck down.

Carrie: I like that. I like the specificity in terms of, like, this particular sin is the one that you need to handle and deal with and confess and walk away from. You know, what does it look like for me to turn my back on that and to do– act in a way of repentance, something completely different versus, “Oh, no, something vague, bad is going to happen to you because you didn’t read your Bible in the exact manner that I prescribed.”

Carrie: Isn’t

Erica: actually in scripture. Right.

Carrie: These were just rules that either OCD made up or somebody before you said, “Hey, do it this way,” and it didn’t mean that you had to do it that way every single time. It’s just, “Hey, here’s a general guideline,” that maybe OCD hopped on. This is really good. Sounds like for a lot of your life, just a general sense of feeling shame and bad, and I run across a lot of people who listen to our podcast that feel that way.

Carrie: And stepping out of that shame of who you actually are can be really, really challenging. Any other, like, encouragement or advice that you would have for those folks that just feel like they’re stuck in the “I’m bad space”?

Erica: I think for me, in my ICBT, there was an assignment to write an autobiography. I really found that extremely powerful because in those moments when I’m feeling that condemnation, “I’m a bad mom, I’m a bad wife, I’m a bad Christian, I’m not doing anything right,” I can look at the truth of what I actually know about myself and what do I see around me.

Erica: I think a lot of times, again, there’s this ambiguous cloud of bad, but if my OCD is telling me that I’m a bad mom, but I can look around and see that my children are smiling and fed and happy and we love each other, that doesn’t mean I’m a perfect mom, but I don’t have to believe that I’m a bad mom. I can get more specific in my own mind.

Erica: Okay, is there something that I wanna adjust with my kids? Maybe. Then let’s think about that. Let’s not do the condemnation hamster wheel that doesn’t actually get us anywhere. I think, too, the more I’ve allowed myself to do things because I want to and not because I’m afraid what if I don’t, has been life-changing as well.

Erica: It’s like I’m allowed to enjoy my life, you know what I mean? It doesn’t always have to based upon fear.

Carrie: Yeah, I think that’s a good word for parents. We do have a lot of parents that listen to the podcast, and it’s like you’re never gonna be a perfect parent. There is no such thing. You’re gonna do things that don’t land very well with your kids, and sometimes you don’t know until after you do it, and then you’re like, “Wow, that didn’t really go well at all.”

Carrie: And so looking at God understanding, like, your heart and where you’re at and looking at very specific things. “Okay, that didn’t work,” or, “I didn’t handle that situation well. It’s an opportunity for repair with my child. It’s an opportunity to look at how could I handle that differently next time.” But I find that when people are really stuck in this shame, it’s very paralyzing because it doesn’t actually help you make positive change.

Carrie: Like, if you constantly believe that you’re a bad person, you’re gonna continue to engage in behaviors that you feel like are bad so that then you can go back and punish yourself, and it’s not conscious. It’s very, like, under the surface that that happens,

Erica: right? I think for me, the reverse bridging in those moments when I’m feel like I’m getting sucked into that feeling of condemnation, like, okay, notice where I’m at, notice the thought.

Erica: What is the thought? Okay, the thought is that I’m a terrible mom. Okay, look down. What are the feelings that make me feel like I’m not doing enough? And recognizing that they’re imaginary. If it’s imaginary, I don’t have to do anything. I can turn around. I can reenter reality. I can hug my kids. I can notice my life instead of constantly being in my head.

Erica: I think my desire is to be present Yeah. That’s huge. I can do that.

Carrie: Yeah. This is really great. I mean, what you had said before about, like, the– for anybody that doesn’t know that Y-BOCS two assessment, uh, is where you score kind of how much time obsessions are taking and how much time you’re engaging in compulsions, and what happens if you try to resist, and how hard is it, et cetera.

Carrie: So there’s those questions. And so to go from a severe range to a subclinical range, like, that’s incredible. That’s amazing. What does recovery process look like for you nowadays?

Erica: It looks like being okay With having the beginning of an OCD spiral, ’cause they’re gonna happen, and even the middle of an OCD spiral.

Erica: But when I can recognize what’s happening and be like, “Oh, that’s OCD, I don’t wanna do that,” I can make the choice to move along. The other thing that it looks like is I can talk to my husband, or I live with my sister and a friend of mine too, and just be like, “Hey, just so you know, I’m fighting an intrusive thought, and I’m gonna pull myself out of it.”

Erica: And sometimes we’ll talk a little bit about the substance of it, but I have to be really careful not to do a sneaky check or, that’s what I call it, is a sneaky check is like, “I’m having an OCD thought that you’re upset with me.” Like, don’t do that. And I always am clear to be like, “Please don’t reassure me.

Erica: I don’t need that.” But just, like, letting people in can help too sometimes. Sometimes I don’t need to. Sometimes I can just be like, “Oh, I had this thought. I don’t need to engage with it. I can move along.” I think for a while I was having fears about, like, oh, well, if, if I’m in the spiral at all, that means I’m failing, and that’s just not true.

Erica: ‘Cause it’s gonna happen. You can’t make the OCD go away totally, but you don’t always have to listen to the fire alarm or the screaming baby. You can just kind of, like, “Okay, I hear you. We’re concerned about something, but we can move along. It’s okay.”

Carrie: Yeah, and then it’s like, okay, just reengaging with the present moment and what’s actually happening and moving towards my values and what’s most important.

Erica: I think the physical sensation was one of the hardest things for me to get past, because it was like this perpetual feeling of just nervous energy, anxiety, and gnawing at me all the time. And the fact that I have tools now that I can trust, that’s not gonna be around forever. Like, okay, you feel bad.

Erica: That’s okay that you feel bad. You’re not gonna feel bad forever. We can move along.

Carrie: That will die down as I don’t engage with it. If I engage with it, it’s gonna become bigger and worse and scarier, but if I don’t disengage, then that is gonna eventually die down. I think is really good for people to know.

Erica: Yeah, ’cause it’s imaginary

Carrie: too. Yeah. Well, thank you so much for this. I hope that you are enjoying the Personal Story series. I’m so glad that Erica was willing to share her personal story with us. I know we’ve had people ask about OCD and autism occurring together. We had an episode previously on ADHD and OCD.

Carrie: So we will have one of our previous guests, therapists, come back and talk about OCD and autism together in the fall. I’m very excited to bring you that episode. And of course, if you have any guest suggestions, you can always contact us via the podcast, carriebock.com. I’d love, love, love it if you would sign up for our email newsletter.

Carrie: It comes out once a week, and it lets you know just little devotional thoughts about OCD, managing that, as well as things that are going on in my life, podcast direction, upcoming things that are happening. You’re gonna become the first to know, and you can sign up for that on the homepage of carriebock.com.

Carrie: Until next time, may you be comforted by God’s great love for you. Christian Faith and OCD is a production of By the Well Counseling. Opinions given by our guests are their own and do not necessarily reflect the views of myself or By the Well Counseling. This podcast is for informational purposes only and should not be a substitute for seeking mental health treatment in your area