Today’s podcast and blog is part 1 of a 2-part conversation with Dr. Stephanie C. Holmes. Stephanie works extensively with neurodiverse Christian couples and families, to help these families better understand, communicate and connect with each other. Stephanie has personally experienced many of the same mental health and spiritual health challenges as the families and ministries we serve. This is part one of a must-hear/must-read podcast interview.
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Catherine Boyle: Hello, this is Catherine Boyle from Key Ministry, and today's podcast is a real treat for me—and hopefully for all of you who are listening, because I get to interview a guest! Today, my very special guest is Dr. Stephanie C. Holmes. Stephanie may be familiar to our audience; she's presented at some of our conferences; she's on other podcasts. I just heard her the other day on the Rising Above podcast. She does a lot of great work about family support and marriage—we're talking about relationships for (people when) autism or other neurodiversity is involved. Stephanie, welcome today, thank you so much for joining me on the podcast!
Stephanie Holmes: I'm glad to be here; I love what you all do, and I'm all about supporting what you all do, so it's a great collaboration.
CB: Yes, absolutely. Well, just in case our listeners are not familiar with you—if you would, just talk a little bit about yourself: who you are, tell us about your family, what you've done as a professional, and and then specifically your work around autism or neurodiversity, and how those things have impacted your family as well.
SH: Okay, great. So this may not seem relevant, but it'll make sense as we get into our story. My husband and I are kind of childhood sweethearts. We knew each other when we were 11-12 years old, raised in the same church youth group, all that good stuff. We got married young, and I knew that I wanted to go into counseling at some point when I was in college. So I go do things to pursue that: you get your PC, you get your master’s, and—this also is relevant to the story, because I remember specifically the DSM-IV, or the Diagnostic Statistical Manual, 4th Edition had just come out—it was talking about Asperger’s Syndrome. So this was a new diagnosis added, like high functioning autism. The professor said I would never meet someone with Asperger's, and that Asperger's was so rare—back then, it's like one in 10,000 people—and that we only just needed to know this criteria because we needed to rule things out, and make sure you know the difference between this and a personality disorder, and this and depression, and this and ADHD, and la-la-la. I tucked that away in my head. I was like, okay, Asperger's. That's kind of interesting sounding, and I tucked it away.
I started my career as a marriage and family counselor, and really felt called to the body of Christ. There's a lot of other secular counselors doing good things; I really felt like the body of Christ needed some help understanding mental health. So I’m living the good Christian dream, and then my daughter started having issues at church, and started having issues at school.
That little word kept coming to the back of my mind—that I was never supposed to see. And lo and behold, she did get diagnosed in 2005-2006 with what was then called Asperger's. And it was much more difficult, because autism or Asperger's was considered a male issue.
And they (her doctors) wanted to give her a pediatric bipolar and intermittent explosive disorder (diagnosis), and all these other things—but she ended up with six or seven diagnoses. And when you put all those together, that's the autism spectrum, right? That day, that diagnosis day, really started shifting our family, started shifting my ministry, and then pretty much now 90% of what I do is with neurodiverse marriages, family and young adults.
CB: Why am I not surprised that 90% of your work is around that? Because personally, I'm familiar with so many people that are on the spectrum, or so many people that—you talk to him for a few minutes and you suspect it's probably true. There are things around autism that I think have always been in humanity. So I'm not surprised. I'm kind of stumbling around here, to say this in a nice way. There was somebody in my church growing up, an older gentleman. I would be 100% sure that he was on the spectrum, but of course nobody ever called it that. He was just kind of—a little eccentric—and a very capable human being. He was an engineer—not surprisingly. Not just that example, but other examples—I really believe this has been around for a long time. We're just—it's taken a long time to get language to be able to describe these kinds of things that we do see repeatedly; it's not just the one or two behaviors, but it's a whole system of things that you see in individuals that have these kinds of neurodiversity, or the challenges that go along with that.
So when we're talking about traditional disabilities—a child who has to use a wheelchair all the time, or a child who has Down syndrome or something like that–a lot of times the parents, the caregivers end up having a lot of mental health challenges themselves, because it's a very isolated and difficult life that most people don't anticipate. So it's very understandable that those people have a lot of mental health needs and need support. But talk if you will a little bit about having a child who was neurodiverse: did that have a negative impact on your own mental health? And then when you realized later on that perhaps you were married to somebody who was on the spectrum, how did that impact your own mental health?
SH: Yes, I'm kind of a type A person, if you're familiar with this, type D, I'm a Drive, so I'm kind of like at first–you can't break me down, we're moving forward. I'm a very driven, strong personality. So I think that was—on one hand—a protective factor. Another protective factor was having at that point in time both of our parents near us—all four grandparents alive and involved, interacting with our family, so that helps with some of the isolation, because our daughter could go see the grandparents one-on-one, and have special days with them. That would give me some respite. But what was really more damaging to my mental health than being the mother of someone on the spectrum was dealing with the school system and someone on the spectrum. So I think my mental health was more poorly impacted by the way that we were treated, that you're a burden, ugly things said about you. One of the school psychologists tried to get me branded with Munchausen by proxy, and tried to have custody taken away of our child, which is one of the reasons we moved to Georgia out of North Carolina. So just the stress—my home life is already stressful enough, and you’re supposed to be partnering and collaborating with me—and making it 10 times worse!
That (lack of support from the school) was really poor on my mental health. Church became an issue. The children's pastor—her and her husband were amazing. Whenever I talk about some things that didn't go well at our past church, they were amazing, but churches rely on volunteers, so the way the structure was (at church), there would be kind of the big room where everybody met for children's church. That went well, usually; I never got a call to come pick up my child from there, because she loved every second of it. She loved that couple; she knew that couple wanted her there and loved it. However, after that, you're going to breakout rooms, and that was where the problems would ensue. So a little shout out to really train your volunteers guys, but especially when volunteers are going to be different from week to week, right? My daughter had tremendous food allergies, and they wouldn't work with me. I'm like—just tell me what snack you're going to have, I'll bring my own. I'm not even asking you to have something gluten free and color free; I'll bring my own, right? So my mental health I think was more impacted by those who were supposed to be helping me, and then I think even more than mental health my spiritual health. I mean, I would end up with some resentments. I would end up with—wait a minute, you people call yourself the church, the body of Christ? I felt like an outsider in my own church body.
Another protective pastor was one specific pastor who really ministered to me. He didn’t know how to help autism; he didn't know how to help my family, but he really just poured into me and let me say my truth, and let me talk about what I was going through, without condemning. So those were protective factors. But then my physical health—I would get adrenal fatigue—twice in that time period—or heavy migraines, just like when you're pushing so hard. I was working a full time job in counseling. So between advocating with the school, running the counseling ministry, dealing with this–and everything that comes with thoughts, and dealing with the people who are not helping me, that are pushing back and making it worse…
For the longest time, when our marriage wasn't really great, I thought it was all of that (the challenges with parenting). Then when Sydney was stable, and we moved to Georgia, it was like, Okay, wait—something is still off here. Life is full and church is good, and school is good. And then I went to a conference. The person was describing adult autism, I was like, Oh my word, and the guy says, the lady in the second row—she just figured out her husband's on the spectrum.
So I said (to my husband Dan), let’s have a conversation; I think you're on the spectrum. He's like—I thought that for years! And I was like…
CB: Thanks for sharing!
SH: Yes! I was so focused on Sydney and her presentation with more outward dysregulation. Dan is a quiet guy; he shuts down and goes internal, sort of an escape artist, conflict avoider. So here I am, I'm a pretty big personality. I could be overwhelming to him; I can be an overwhelming person. And then our family was overwhelming, because our little one has ADHD. In our family, we had ADHD, and autism and an autistic parent and a counselor all co-existing. It was really tough.
But I think from that, the spiritual issue was really what scarred me the most. I feel the most scarred and let down in the spiritual world. I guess I kind of expect public schools are going to do what public school does; I can expect this from a non-Christian. But from Christians, from leadership, from people who are supposed to be helping, pouring in, that felt like a double stab to the heart.
CB: I just want to make it clear: your daughter was in Christian school before you guys moved to Georgia.
SH: Yes, she was in Christian School and public school. So when you're kicked out of three different Christian schools, you are not getting back into Christian school, it’s too hard to do.
CB: I love what you said about that one pastor who, you said he didn't have any kind of autism knowledge or expertise or training, but he cared. He just listened, and cared. And that is as impactful, if not more so, than any kind of special needs program we could have. Because if you do things without love, then it's just meaningless. It just boils down to—you need to care for that person who is hurting. And oftentimes when you do that, you learn all kinds of things that we wish weren’t in our churches and in our Christian schools, about the way human beings treat each other. I'm so glad that you had that (support from pastor). I've thought a lot over the years—when families have this kind of experience—particularly if they—historically it's been very easy to be a Christian in our culture, to do the Christian-ese kinds of things: go to church on Sunday morning, and and maybe go to Christian school—but maybe not be all that deeply rooted and grounded in your faith. Just being totally honest here! And if you have something like this happen, and you are not deeply rooted and grounded, how easy is it for people to just turn their back on God, and think that God has abandoned them, or that He just doesn't exist; He doesn't care.
SH: I was definitely in that faith crisis; that's where I was headed. I was like—our interaction (with the pastor) was, hey, I just want you to know that I'm done counseling, done with the prayer ministry; I'm done. God doesn't love me; He doesn't care about my family. My kids can go here (to church) and get some good spiritual formation; I'm peacing out. I'm done.
But he (the pastor) was like, whoa whoa whoa, let's come in and talk about it. Let's come in and talk, to figure out what's going on. Part of my early church history—and I don't know if I’ll get in trouble for saying this—but it was really based on prosperity doctrine. So that was where my faith crisis happened, because if you did certain things and you claim certain things, and you lived a good life, you are not supposed to have pain and suffering. The dark side of the prosperity gospel is if you have a disability, if you have a diagnosis, if you have a financial crunch, something's wrong with you or your faith, or God is mad at you. In that time period, with all that was going on in the school, and even some people at church telling me—what have you done to upset God? Or, your life isn't in order. Or what deep sin or generational sin do you have in your life? If this is what God does to people, I don't think I want to be in a relationship with this kind of God. If He's causing us to suffer on purpose, even though I followed all of His rules, He's not there for me, and my church isn't there for me.
I'm done and I was tapping out, when that pastor stepped in and said, Wait. You don't have a good doctrine of suffering. You don't have a good understanding of God's character and nature; you've been focusing on the rules of religion and not the character of God. And that was the shift; that's what's kind of started pulling me out of a very deep faith crisis.
CB: I find it so interesting that so many people in the world that we work in, and how you and Key Ministry intersect—so many people have been in a very similar place. Life does not meet our expectations. You tell people that, and can tell them a million different ways, but until it becomes personal, and it's something you have to face every single day, then it doesn't really land. And people will either chart a new path—and what I'm seeing in you is that you charted the new path. It wasn't an instantaneous thing, but God helped you really develop what scripture promises—that we're going to get treasures hidden in darkness, that He's going to reveal things to us that are precious, that you don’t generally understand until you're walking through that valley of the shadow. It's not something that you're going to notice when it’s all sunshine and lollipops in your life. So I appreciate your honesty in that, because it does not help anybody to minimize or try to hide what these kinds of challenges can do to your faith. But knowing that God still is there, and that you've gone on to have this incredible ministry because of your personal experience.
Are you still an LPC, do you still have that license, or do you…
SH: So when we moved from North Carolina to Georgia, Georgia didn't reciprocate. You can be a board certified Christian counselor, but not a licensed professional counselor, and then as things were changing in our culture, I decided it wasn't worth it, to be licensed in a state, and then be under what the state would like you to do in certain situations, that you may have Christian principles that go against; I'll say it that way.
CB: So your whole focus really seems to be on autism support, marriage and family support, and truly, I don't think that there's a lot out there in terms of neurodiverse marriage support. So I just applaud you for taking this on, because it's hard to be a pioneer, and it is so very needed. I've said this many times: the kids we're ministering to—kids with disabilities—they grow up! When they have these challenges that are related to autism, maybe they (the challenges) look a little different when they're older, but typically the challenges aren't going to go away. It's so important that supports are out there for families who are adults now parenting kids with autism, but also when those kids grow up and they get married and they have families of their own.
So what are some ways that autism can negatively impact marriage? You said that your husband is a person who tends to be quiet and go inside. That's one way that people express autistic traits, but some people are the ones who explode; they melt down or they are sensory seekers or sensory avoiders. So talk a little bit about what those kinds of traits and behaviors can do to a marriage.
SH: So earlier this year, I started research and it's in a peer reviewed journal. First of all, we found out that 86% of adults who were diagnosed were diagnosed over the age of 30, and the big age group was 40 to 49. The next age group is like 50 - 59, then 30 - 39. Someone's usually married, and possibly has a child by then. Because of this (late Asperger's diagnosis) the research calls them the lost generation, because there's this whole group of men and women that missed this diagnostic criteria until high functioning/autism level one and all of that came in—so they were missed. And in the Christian culture, if you are in a really conservative space, where the man is the authority or the head, and he has the final say—add that in the mix with some maybe really black and white pharisaical view of scripture, and someone who can blow up and dysregulate, and I get to do whatever I want because I'm the man of the house, and I'm undiagnosed. And I'm supposed to submit and be quiet and happy and not say anything and not tell anyone and not undermine my husband. So that dynamic could become a very toxic situation for families.
So what's happened in the trends that I'm seeing—as a child or a grandchild was diagnosed, and then as you start researching and looking up your family tree—we know according to a 2019 JAMA 2.1 million participant report, (autism is) 80% hereditary—so if you've got a child or a grandchild, then you've probably got some adults that are undiagnosed on the spectrum.
If we go back to some of the diagnostic criteria—as you mentioned, the first one—if someone is a big emotional dysregulator, and by 40 - 50 years old, they still have not learned how to regulate those kinds of feelings? That is very scary. It's disturbing when a 5 or 13 year old is dysregulated, but when someone's 40, 50 and 60, and they're dysregulating in that way? It's terrifying to a spouse. And then when you don't know the name of what's going on, you think, oh, it's rage; you just need some anger management. But it’s way bigger than that.
So that's one way (of emotionally dysregulating), but then the ladies who are listening—if you're in another kind of—well, wait a minute, Stephanie, for those who shut down and then don't talk for one, two and three days—that's not scary, but that's really emotionally painful—that we had a conversation years ago, and he hasn't circled back around. In fact, he may have disappeared for a day or two because he's so overwhelmed, and here I am left with these emotions and this painful thing in our marriage, and he's gone.
So that dysregulation is a big piece (of the impact on marriage) and then theory of mind is another huge (piece). It's becoming very controversial to talk about this; the adult autistic community doesn't like this being talked about, but it's the truth. Theory of mind and perspective taking is part of the autism spectrum. It's how you get the diagnosis, and theory of mind is perspective taking, empathy, compassion, being able to show compassionate care. We know for sure people on the spectrum have feelings and can show compassion, but it's the what do I do with it—I see that you're sad and you need something right now; what can I do to help you? So we took sympathy and turned it into empathy. Whereas in many situations, maybe the spouse who is neurotypical needs something, and the autistic spouse is like, Okay, I see you're hurting and needing this. It would be a great time to change the oil in your car! Yeah! That would be helpful, to go to the grocery store for you.
Is it important—yes. Is it the right thing to do in that moment, when someone probably wants a hug? Probably not. So when you put that on a spin/repeat for a year—a decade—two decades—and you still don't even know what this is called? That causes a lot of confusion.
CB: Yes, it's totally understandable. When you were talking about that, it's an inability to take the perspective of the other person; it's not being able to see as they see. And you would expect if you're married to somebody, that they could see things the way that you're seeing them. But that often is not the case. And it's pretty easy to see that creates this incredible emotional distance in marriages, so much so that people can end up really at odds—if they stay together—but it's not a good kind of marriage situation. They can really start to think of the other partner as the enemy.
I love that you actually have teaching and information on your website about enemy mode. I think that's just such a brilliant way to describe this, because that's exactly what it is—that you see the other person not as this person that you fell in love with when you were young, and that you've created a life with, but as somebody that is opposed to everything that you need and want. So if you would, just talk a little bit about enemy mode, and how people kind of get into that, and how they can get out of it too.
SH: We came across the work of Dr. Jim Wilder, who wrote the book “Escaping Enemy Mode” and the book says nothing about autism or the spectrum or neurodiversity, but with the background I have in neuroscience, as different brain circuits were being talked about—like the amygdala, or the orbital pre-frontal cortex (OFC)—I was like, wait wait wait—these are things that are really impacted and challenged in people (with autism). So I would stop the book and I would look it up and I would say, Yep that's the same circuit, that's right. And he talked about something called simple enemy mode, which is an unintentional kind of relational harm. It simply is like you've turned the relationship circuit (RC) off in your brain. He calls them RC's.
What I found fascinating is that circuit, that OFC—is neuroplastic throughout your whole life. So while there's no curing someone of autism, and we don't talk about that because neurodiversity is a valid part of the human existence—but relational health is always good, no matter what your brain type is; we should all be working on better relationships and being emotionally healthy people. So when I read that, oh my goodness—the OFC can be changed! You can learn to turn your relational circuits on; you can learn to build joy with other people. And essentially, if your relational circuits are off, and somebody comes and interrupts you, and you now see them as a threat, or an object to be dealt with, you're in enemy mode. That happens a lot in neurodiverse marriage. Maybe the neurodivergent person is in one of their special activities, and a child or a spouse walks in and says, Hey, can we do whatever? And they get the big explosion, because the relationship circuits were off. You interrupted me; you became a threat to my environment, and I am treating you like a threat.
So I was like, Wow! I’m armed with this knowledge. We can teach people—you can turn your relationships like this on, or you can turn them off. And if you don't know how to turn them on, let's practice and get better at that, because joy is fuel of the brain. And when you have all these (church teachings) growing up—about the joy of the Lord being my strength—literally, in neuroscience, joy fuels your brain. And if you don't have it, it drains your brain. So the elements of being able to build joy and build attachment together, no matter what your neurotype is, that if you're intentional about turning those relationship circuits on—I tell my guys—you don't get a pass, your neurology does not give you a pass to build joy! So that was the most groundbreaking research that I've read, because this gives hope.
It just doesn't mean, okay, we are what we are; we're a neurodiverse couple; we're just going to struggle forever. No! There are some things we can do to change brain circuitry, and build a new relationship. We're still going to be quirky and different than the other couples, that's fine. Quirky and different is good, but it's got to be healthy, and it's got to (support) spiritual formation—and you just don't get a pass—I tell them all the time, you don't get a pass from the fruits of the spirit and joy because of your brain neurology. No thank you!
CB: What you're talking about sounds a lot like social skills kinds of training. And I know it's a little bit different—and I know some people on the spectrum don't appreciate that sort of thing, but it can go a long way towards helping people really understand what other people's expectations are, if they're on the spectrum, and that's not something that comes naturally to them. It is not (something which comes naturally), which is absolutely the case for a lot of people on the spectrum.
It sounds to me like once you got the diagnosis for your child, and then later for your husband, that really unlocked a lot of things for your family. It took you in a direction you definitely didn't anticipate, but it was something that ended up being very helpful for you. And I've seen—maybe not so much anymore—but definitely when my kids were younger, there was a lot of hesitancy to get a diagnosis, because of the label that would go along with the diagnosis. But I have encouraged people for a long time: people are going to make their own labels based on your child's behavior, so it's really better to get the right one, so that they can recognize that this (the child’s behavior) is not just willful misbehavior, this is something entirely different, and requires a different approach. It also allows not only personal interaction but also—if they need medical treatment—just so that doctors and therapists, and everybody else in their life is treating it correctly. So if you would, just share a couple things about what diagnosis did for your daughter, and then later for your husband as well.
SH: Yes, so I want to give a shout out to my friend Faye who came up with the “D's.” I sort of put this out there for you guys—it's a pet peeve of mine, for people who say they don't believe in labels. But it's really important to know “D’s”, and that's—what is difference, diagnosis and disability and what is disrespect and disobedience? If it’s disrespect or disobedience, then yes, there's a consequence that comes with willful behavior. But if there's a difference, diagnosis or disability, you can't punish disability out of someone. You can't punish a difference out of someone. And so many times, especially in schools and churches, when they see a certain behavior—especially in southern culture—being disrespected, it's like the worst thing ever— especially in certain settings—and you better give eye contact, and you better do certain things, and yes ma'am, yes sir, at least in southern church culture.
So my daughter would get just a lot of negativity about her behavior: she's sinful and she's naughty. And it's in the book, which we'll talk about in a minute. But she struggled. And every time I read this, I get tearful—how an 8-9-10 year old can struggle with the verse about being fearfully and wonderfully made, and think that verse does not apply to me. How my church has treated me; how could I be fearfully and wonderfully made, when the school doesn't want me; the church doesn't want me. Yes, Mom and Dad say it, yes my grandparents say it, but they have to, because they're my family, right? But you know the other people in my life don't seem to see me as fearfully and wonderfully made.
So I'm all about early intervention and early diagnosis, because it is harder the older someone gets—as a teenager, young adult, midlife adult—to be processing they're on the autism spectrum. But it's absolutely necessary so that you know what you're dealing with in your relationships. I think it's all about how we tell our children about their differences, their disability or diagnosis. I mean, you could come with a long face, and this is terrible and all of that. I was like (with my daughter) hey, I just want to tell you about a way that you're different, and here's why you're having some struggles. It’s got a name. It’s called this.
I used those same words, Catherine. People use labels, and it might be disrespectful or stupid or lazy or belligerent or some other horrible label that has nothing to do with the child that’s character defaming. Autism or ADHD or processing disorder describes what's going on in their brain and their neurology system; these other words are character and personality and shame words. So I think that's really important as we kind of get behind a little bit—I mean, every movement has some toxic pieces, but the neurodiversity space says we need all kinds of brains: all kinds of inventors and statesman and politicians, and a lot of people who have done really big things had a neurodiversity, and we need them in our society.
Stephanie addresses much more about neurodiversity, autism and faith in part 2 of this podcast interview. Follow this link to read part 2 and learn more about Stephanie’s resources for couples and parents. Stephanie will be presenting at Disability and the Church; learn more about the conference and register today.
