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What If Your Nonspeaking Child Understands More Than You Know? Hope & Faith with Katie Asher · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey everyone. Welcome back to the Inchstones podcast. Today's conversation sits at this intersection that I know so many listeners feel, which is profound. Autism, motherhood, faith. I'm going to get choked up right away. And the questions that I return to again and again on Inchstones and in daily life, which is how much of a person are we missing simply because they cannot show us who they are in the ways that we expect. And today my guest is Katie Asher. She is the co author of the Book of Heaven, written alongside her non speaking autistic son, Houston. And their story is far more than autism. It is about the depth of our interior lives and it is about what happens when a mother begins to understand that the child the world has so deeply struggled to read may in fact be perceiving far more than anyone imagined. And as a Catholic mother myself, raising Milly and Mac, this conversation feels so deeply personal to me. It shows so much of how my own faith has been shaped by my children. Not because of disability or given to me in this like, tidy little lesson from God, but because loving them has forced me to, to reconsider what intelligence looks like, what communication looks like, what dignity actually means, and where God might be present in when so much remains so hidden in such a mystery from view. And Katie's story takes on these questions and the unseen interior world of her own son. So, Katie, what if there is far more than we ever were known to understand and perceive? I am so, so thankful to be able to welcome you today here on Inchstones
• 1:52
  Speaker B: I'm thrilled to be here. Thank you for having me. Loaded question. This is really the paradox that all humanity has to wrestle with. And that is that our sensory system and our logic are extraordinarily limited. And that everything, literally every single thing that we see and can't see comes and is designed and is made, created by God. In fact, no matter can exist without being created by God. So you and I perceive 4 of the energy around us with our
• 2:31
  Speaker A: sense.
• 2:32
  Speaker B: And that means there's another 96 out there that we don't access to, sensing or understanding with reason,
• 2:42
  Speaker A: you know, before we really dive into the heart of that conversation, before Houston could really even communicate reliably. And you know, looking back, like, take me back to the beginning, what assumptions were you unknowingly making about what he understood? Cause that's where I think so many mothers and caregivers begin this journey, right? Because they're, they're, they're taking, they're making assumptions that they don't even realize. They, they, they are making, nor do they want to make
• 3:13
  Speaker B: sure. And, you know, whenever I. We're all taught to think logically, to make. We're. We're taught through a materialistic paradigm that you make. You presume what is true based on what you observe. So if. If someone. If you tell someone to open the door and they don't open the door, then you're really faced with either they don't understand what open means, they don't understand what door means,
• 3:41
  Speaker A: or they.
• 3:42
  Speaker B: And yet that's exactly how our educational system has presented everything to us is either not understanding, not presume, not competent, or defiant. We have never, ever considered the possibility that they understood, but understood what motor is and how motor is required in every single part of communication and compliance.
• 4:10
  Speaker A: Right. Right. And it's, you know, that friction point, as you and I know, becomes this not only rupture as a mother, but it's also what I love to believe, and I think that you do, and so many others do, is that that rupture is allowing for the growth of what your own perception is. And it fe. But it. But it feels so. It hurts. I mean, it's part of the suffering that we get to experience, but it's not what. What is. What's transformed by that rupture of perception.
• 4:42
  Speaker B: I think that whenever you see your child, you see all the other children developing normally, and you see your child missing out on everything and not meeting all of those milestones, those end stones that you talk about so
• 4:54
  Speaker A: often,
• 4:54
  Speaker B: you know, there's this grief, this just terrifying grief of what they're missing, but of what the future will be and what else out on. And we. We limit what we think is possible based on what we see happening around us.
• 5:11
  Speaker A: And
• 5:11
  Speaker B: so I think, you know, you asked what did I. What did I think he was limited to? I thought he was limited to his ability to respond to me, the limit of his perception. You know, one of the things that I did recently, which was extraordinarily difficult, was go back and look at some pictures. I had taken a diary of him when he was little. And I actually had documented so much, and I didn't even realize it. And I never wanted to go back to that because that terrified me. To relive that grief and to see what had. What we lost. I actually found he had spoken his first word the day after we were getting his gamma globulin injections after his vaccine injury in the hospital. He literally said his first word in the hospital. And I, at 8 months old and little like it was the strangest thing. We would get these little glimpses and it was like they would be taken away as if the door was being opened and shut again. That and I, and throughout the book I get these little stories where this little brilliance would emerge and I would be, how can he do this? But then everything else is so chaotic and stood and, and, and so I, I made the mistake and it was a catastrophic mistake of listening to the experts and limit what was possible based on what they told me was possible. And, and the chaos. I let the chaos tell me what was real and what was going, what was possible.
• 6:51
  Speaker A: It's interesting. Order and disorder are like these words that we hear so much and it's, I'm so, so glad you brought this up. You let the chaos, you let the disorder tell you what the next right thing was to do. You let, and it's so easy to let that happen. Right? I mean, we are, we live in a world that is order. I mean, you can look at any flower, right? You look at any living thing on this earth and there is order and beautiful order to it and how it emerges. And so it is very, very easy because of the how, how deeply a diagnosis sits next to the word disorder, obviously, and chaos. And if we go down the path of just allowing that to run things, we forget that there is order within. That is more of a mystery. And I, I, I couldn't, I couldn't agree with you more, is that if you allow that, if you go down that path, it actually just creates more chaos. It actually just creates more disorder
• 7:52
  Speaker B: and the hopelessness too, because the hopelessness comes with the chaos.
• 7:57
  Speaker A: And
• 7:58
  Speaker B: it is, it robs you of the ability to imagine, to hope. And hope fires imagination. It is literally the place where hope resides.
• 8:09
  Speaker A: That's right.
• 8:10
  Speaker B: And we have to find a way to look past what we see, to look past heads going through walls, nakedness, you know, hand biting, horrible noises. We have to find a way to look past that and see the person. And when people understand that you are a soul and
• 8:32
  Speaker A: you have
• 8:32
  Speaker B: a body and it's the, it's the motor in the body that's broken that's disconnecting them.
• 8:38
  Speaker A: That's right.
• 8:39
  Speaker B: Person from the body, then you begin to approach everything in a very different way. The other thing I want to touch on real quick is that we were taught through a behaviorist model, a materialistic model, which requires behaviorism. And behaviorism basically says that intelligence is equivalent to motor. So if motor is broken, they believe your intelligence is broken. And all of the Mechanisms by which they determine and they measure intelligence require motor. So if your motor is broken, you have no way to communicate your competence, your intelligence, your, your desire, your warmth, your, your grief. Anything that is going on internally, you don't have that capacity. Motor is separate from agency, and
• 9:25
  Speaker A: that's.
• 9:26
  Speaker B: People really need to grasp with.
• 9:28
  Speaker A: Yeah, well, I mean, and it's no surprise, right? I, I've done my own sort of unbecoming in this sense of. It's no, there's no surprise that we, you and I and all the other mothers and caregivers out there, we have been societally conditioned to believe. And our, it, it, it became ingrained in our psyche to, to just accept that the behavior model, the materialistic model is the, is the model. Right. We, and, and we have to give ourselves some grace, I believe, to unbecome from that point because we, since we were little, and we all know that things that are ingrained in us from an earlier time become more difficult to un, you know, untether from. So I, I'm, I, I'd love to hear more about that because I, I, I want so deeply to have every mother to have grace for themselves as they allow themselves to feel untethered from that, that paradigm.
• 10:21
  Speaker B: Sure. When Houston began communicating, obviously, I, I'm. It was just the depth of an entire soul of a grown man, my entire child.
• 10:32
  Speaker A: He was 22, right?
• 10:34
  Speaker B: Yes, 22. It was a few weeks, well, two months before he turned 22. And that's when the weight of all of this comes out. And I was not prepared for that much truth.
• 10:46
  Speaker A: Yeah,
• 10:47
  Speaker B: that much. You know, and it was hard.
• 10:50
  Speaker A: Did it feel. One of my favorite words is life luxury. Did it feel like a luxury or did it feel like a
• 10:56
  Speaker B: luxury? It felt
• 10:56
  Speaker A: like a Mack truck wrapped in a blue bow.
• 10:58
  Speaker B: It felt like. I, I described it like a gale wind, you know, like being knocked over.
• 11:04
  Speaker A: Just like. Yeah,
• 11:05
  Speaker B: yeah. And because I knew the weight of it. It was the weight of
• 11:08
  Speaker A: an
• 11:08
  Speaker B: entire soul. And this is why it's so critical that we do presume competence for every single child, every single one, no matter the diagnosis, no matter if it's chromosomal or anything else, we must presume competence. And competence is presuming that they understand you. They just don't have the capacity to tell you. That's what basically means, is that they are a functioning human being made in the image of God. And the only thing that's missing is their capacity to communicate.
• 11:42
  Speaker A: Right. You know, to blend both science and faith. It's this phrase that's recently come to me, which is this, like, epistemic humility that these experts, right, these people outside of our world can tell us what the evidence about our children can support. But a mother is still just so deeply observing year after year after year, that something is existing that cannot be adequately explained. And I can only imagine when that soul, we say, the gale force wind of his soul expressing after quite literally two decades, I can only imagine what that felt like.
• 12:24
  Speaker B: And it was guilt. As I said, enlightenment came with a heavy dose of guilt. And the grace that you were just discussing is it's difficult to bear when you realize everything that you deprived your child of. All the times you didn't fight that, you just accepted the experts. And when I was looking at those pictures and reading about, you know, my son before he was injured, he was like crawling over to baskets, reaching in, getting out the exact toilet, he showing it to us. And everyone was like, he's so smart. And then he just, and this is what he said when I was reading all of that. He said, watching you look at the pictures of us, I saw the grief sail back to the surface of your heart. The grief weighted you so deep, nothing could allow you to hope. Remembering the lost years is not a time to return to grief. It is a time to know love never broke from us. God told me one day you would remember how smart I was.
• 13:30
  Speaker A: I love that.
• 13:31
  Speaker C: I
• 13:32
  Speaker A: know. I, I, I, I too have a. My, My best friend is my son, Max, godmother. And she came in the weeks after his birth to, to visit us in New Jersey. And he was all of weeks old, I want to say, like six or seven weeks old. And it was around 11 weeks that I really realized that he was going down the same sort of path as Milly But at six or seven weeks old, my best friend, who had just met him and obviously knows me so well, I would be talking to have him on my shoulder and I would go, hey, buddy, boo all the little cuckoo things. And he would respond like, he would go, like at six or seven weeks old. And I'll never forget my best friend looking at me and going, he is brilliant. He's already responding like, he's literally already having a conversation with you. And she's felt this pride as his godmother. She was like, I knew you were the smartest. You know, all this, like, back and forth and then again, knowing the time that has passed. And I recently just shared that with her. I said, it's in there. You saw that at six or seven weeks and we're going to be finding our way back to that. And I love that you again, we get these souls and you're basically sharing like just the template for what I'm already, you know, sort of going through now is the recognizing that there is these law. There are lost years, but it never, it never went away.
• 14:51
  Speaker B: It's, I
• 14:51
  Speaker A: recognized it so early. And there is a grief with that.
• 14:54
  Speaker B: There's purpose in it and it's not a purpose that any one of us would logically choose. There,
• 15:02
  Speaker A: yeah.
• 15:02
  Speaker B: Greater purpose that, that is beyond our, it's spiritual. There's
• 15:08
  Speaker A: a.
• 15:09
  Speaker B: And people get very angry when I say that because the suffering is so intense. I don't want to, I don't ever want people to hear what I'm not saying.
• 15:20
  Speaker A: And
• 15:20
  Speaker B: I'm not saying that it's good that you suffered. I'm not saying that. I'm not saying it's good that my son was injured.
• 15:29
  Speaker A: It
• 15:29
  Speaker B: is a crime. It's criminal. It's an injustice that I am demanding reckoning for everything that was stolen from us. I am getting it back. I am absolutely going to relentlessly spend the rest of my life fighting to get back what was stolen from us. At the same time. Kind of like, you know, when Joseph was thrown into the pit and he spent all years in prison. And then he, you know, at the end of it of his father's life, his brothers are terrified. He like broke into overwhelming, sobbing tears.
• 16:07
  Speaker A: Yep.
• 16:08
  Speaker B: What his brothers had done to him. But what he said was what you meant for evil. And this was evil. What was done to our children is evil. God meant for good, for the saving of many.
• 16:20
  Speaker A: It
• 16:20
  Speaker B: is a paradox that I struggle with. Some days I'm in a place of hope and I am so frustrated and so hurt and so tired. I, I struggle to balance and I'm just being honest.
• 16:37
  Speaker A: Oh yeah. No, I, I, I couldn't agree more with you. And I think that finding again, it almost has to go back to faith because if the suffering. It's almost like the religion does teach us that if we do not embrace and walk toward the suffering that happens in our lives, it will become consumed by the evil and the demonic and the, the dark. It will, you will be consumed by the darkness of the suffering if you do not allow it to transform you.
• 17:13
  Speaker B: I agree. Either the resentment or the grace. It's
• 17:16
  Speaker A: one
• 17:16
  Speaker B: of the other. And we struggle with that. I struggle with the resentment and I, and I know I'm in grace.
• 17:24
  Speaker A: Yes, yes. And you know, it's almost, I mean, to to bring it to modern day times. I just recently listened to a podcast by the Dominican Sisters and they have this awesome podcast and they were talking about how the Shawshank Redemption is like the. Basically the story of Jesus Christ and how, you know, we see that we're allowed to be transformed by your brokenness and then share that through the livable, small, daily, joyful messages within the suffering. And I know it sounds so cliche. I sometimes find myself. And I'm not sure if you do too. I know that I can sound really cliche and like, okay, Sarah, you know, people being like, okay, there she goes again on these, like, small little wins or these small little things within this, like, brutal pain. There's no alternative. The alternative is giving into a life that I. That basically is saying that, like, I don't have meaning, my children don't have meaning. That, that is, that is. That's not a choice of mine. So what is the choice
• 18:24
  Speaker B: that you mentioned? Shawshank. I actually quote Shawshank Redemption a couple times in the book because it is such a powerful film. But it's, you know, hope. Hope is one of the most dangerous things you can do. Hope can drive a man mad.
• 18:37
  Speaker A: That's right.
• 18:37
  Speaker B: Anything that can save us.
• 18:39
  Speaker A: That's right. And that's where the dichotomy, I think, in this life begs of us every single day. And what I would love to just always convey to anyone that listens consistently to Inchstones and reads your. Your work and. And is living this life alongside of it is that it is daily and it is a choice. And you actually, that's the agency that is the. That is the free will that is given to you by God.
• 19:07
  Speaker B: And when people want to know how, because it's really difficult to look at, I do this one whole chapter where I'm like, can you believe if. And I go through every single thing.
• 19:16
  Speaker A: Can
• 19:17
  Speaker B: you believe when you know, when the head. The head goes through the drywall? Can you believe when all the shampoo bottles are dumped in? Can
• 19:25
  Speaker A: you
• 19:25
  Speaker B: believe when you're screaming? Can you believe when there's no sleep? Can you get. And it is exhausting at the weight of what we are being asked to believe through.
• 19:35
  Speaker A: That's right.
• 19:36
  Speaker B: And the only thing that I can tell you is to do what God's word says, which is to take him at his word and to keep remembering the promises that he is and his faithfulness from the past. And I call it vitamin F, but like vitamin B every day. Take your vitamins, take your faith.
• 19:55
  Speaker A: That's Right.
• 19:56
  Speaker B: Tell yourself God's faithfulness. Tell yourself the hope. Tell yourself the truth. And I do hope. Like, what I did was. I think this part's important, is that I explained the thought piece. Their ability to hear thought actually didn't. Like, you know, me discovering that piece was extraordinary. But it actually wasn't the beginning of the story.
• 20:21
  Speaker A: Right.
• 20:21
  Speaker B: What had happened was when he was 17, I had had this one moment of a miracle where he had come to me and I was, like, working three jobs, single mother, five kids, no money, just dog tired. Like, I was so tired. I was like that fatigue where I was vibrating. I couldn't even sleep anymore.
• 20:41
  Speaker A: Yeah.
• 20:42
  Speaker B: Was so heightened.
• 20:44
  Speaker A: Yeah. Your cortisol was just keeping you afloat.
• 20:46
  Speaker B: And I was just like, kind of laying there vibrating on the couch. And Houston came and sat at my feet, so still and. Which, of course, is not normal at all.
• 20:56
  Speaker A: Right, right, right, right.
• 20:57
  Speaker B: You know that
• 20:58
  Speaker A: for a second, that was atypical,
• 21:01
  Speaker B: right? Exactly. I'm like, to another mom. I don't have to explain that. They're like, still, what? But he reached over and tugged at the blanket, just like you would to get someone's attention, and spoke and said, mama. And I opened my eyes in shock at the sound of my voice. It had never come from those lips.
• 21:22
  Speaker A: And
• 21:22
  Speaker B: he was looking directly into my eyes, which he had lost the ability to do. And he said, I love you. And I was wrecked.
• 21:33
  Speaker A: Yeah.
• 21:34
  Speaker B: And what I had been learning at that exact time was that everything comes from thought. Like, thought is actually the source of all matter. You know, this. You know, this pen was first a thought before pen. And if. No. Of this pen, it wouldn't exist. And so when I saw that happen, I. I was given an opportunity, and I was always. And we're all given this choice. And I could either believe in the miracle, or I could accept my circumstances and believe in my circumstances.
• 22:06
  Speaker A: Yes.
• 22:07
  Speaker B: Chose to believe in what I couldn't see.
• 22:10
  Speaker A: And
• 22:11
  Speaker B: I tell that story to someone and he goes, that wasn't a choice. That was a mandate.
• 22:16
  Speaker A: That's good. I like that. Really, really upgraded. Yeah. Ex. Like, what is a stronger. What is a stronger word for choice? Yeah. You know, I have to go back to this vitamin F, because I think it's going to resonate so much. You know, what you're describing isn't faith as a feeling. It's like this discipline of remembering. Right. Like, we have to. We have to embrace the discipline of remembering. And when a present moment like that gives you. When. Or I'd say the opposite. You Know when present moments give you little evidence that God is there, you get to borrow from the evidence of the past.
• 22:48
  Speaker B: That's right.
• 22:49
  Speaker A: You get to borrow that.
• 22:51
  Speaker B: Like Hebrews 11 is all about how, you know, Abraham did not consider his age or the death of Sarah's womb
• 22:59
  Speaker A: like he
• 23:00
  Speaker B: didn't consider those. His only consideration was, is God faithful? Is
• 23:05
  Speaker A: God
• 23:05
  Speaker B: faithful to his Word?
• 23:07
  Speaker A: And
• 23:07
  Speaker B: he is.
• 23:09
  Speaker A: And I think that specifically in the caregiving mother role, we understand this in a very particular way because there are seasons that nothing is ever being resolved. Right. And your child is still struggling. And like just what you just gave the example of for yourself, you are. You are bone tired in a way that you never realized you could even hit as a human, as a. As a person that's alive. And you're praying that there isn't something obvious, you know, or you're praying because there's no obvious answer that's arriving. And you know, vitamin F. I love it.
• 23:45
  Speaker B: There's. There's so much power in our thoughts that our thoughts literally create matter. It's not this thing I do, because this is what I've been told I. I'm doing. It's that our thoughts literally create our circumstances literally. And it is not this. We've been given this. This test of faith that is extraordinary. And I don't mean it's extraordinary just in what it will accomplish. It's extraordinary in what it must overcome. It's like the Elijah when he puts the water and he keeps dumping water on the fire and everything and wants to make the fire, and he still calls on God and trusts God to light the fire. That's literally like we have been bombarded one thing after another and we are still expecting God to be faithful even with all of obstacles. And this is a testament. What we are doing in believing God is a testament to his goodness, showing himself faithful. And he cannot not be faithful. He literally cannot lie. He can't not be faithful. When we see what we think is him not being faithful is us failing to believe that even if we can't see it, he's still going to be faithful.
• 25:04
  Speaker A: Right. Right.
• 25:05
  Speaker B: Even past our lives. His faithfulness. And this is something that I want people to understand. All time is actually going on at the same time. So I like our prayers now actually have the capacity to do things in other places in time and space. Which is extraordinary and exactly.
• 25:21
  Speaker A: It is. It is
• 25:22
  Speaker B: Catholic doctrine actually understood this a long time ago and really incorporated this into a lot of its practical understandings of the faith that it was all encompassing of all time and space and the materialistic influence on not just behavior, not just our educational systems, but on what we think is possible, was so severe that we lost the ability to perceive beyond what we could perceive.
• 25:51
  Speaker A: Yes, yes. And I. I hope that we, in our lifetime, we get to see this transformative belief and the usage of our lives to bring about an entirely new understanding. I. I don't know if we. What
• 26:08
  Speaker B: I think it already has. I think people.
• 26:10
  Speaker A: I think it is too.
• 26:11
  Speaker B: You'll go. Wait a second. I actually have some agency here. I have some capacity to
• 26:17
  Speaker A: communicate
• 26:18
  Speaker B: with my thoughts.
• 26:19
  Speaker A: That's right. You know, we can. We might need to have a part two to talk about the telepathy tapes and how this has forged, you know, an even greater understanding on a global scale of this. Because it's well beyond my story and well beyond just your story. You know, Katie, this conversation is so ripe with so many incredible blips that I hope listeners are just going to take and allow, carry them and get and literally provide this, this foundation for them to go about their day and can continue living so beautifully and so authentically and with such unapologetic love and understanding and, you know, an unseen fuel for what, you know, they can do. I think that something you just said just now is that it's extraordinary in what it will accomplish and it's also just extraordinary in what it must overcome. Based on. And you shared the story of Elijah because so much of caregiving is lived in that space. Right. We become mothers believing love will be instinctive. And then some of us discover that love will also require us to become observers and advocates and researchers and translators and, you know, witnesses to children in the. To the world that, that, that truly just at its core will not immediately understand. And I think sometimes the most extraordinary thing isn't the breakthrough. It's. It's just the mom who gets up the next morning
• 27:44
  Speaker B: and this story that's always held me as a human being, as a mother, my entire life. Where's the Giving tree
• 27:53
  Speaker A: That, that talk about a book that will bring me to my knees upon even looking at the cup. No, just looking at the COVID of it. I can't even look at the COVID of it without crying.
• 28:02
  Speaker B: And it's just like. But at the end, when he was a little boy, was an old man, all he had left to give was a stump set up. Be the strongest stable sort of stump that he could
• 28:16
  Speaker A: be.
• 28:18
  Speaker B: What a great gift that we get to be givers.
• 28:21
  Speaker A: Yeah, it's one of the Greatest Inchstones is realizing that within the entirety of every day and month and year, it's. It's that life making that choice and standing or sitting strong in that isn't waiting for us on the other side of all of. It's actually. We're actually living it. And I say it's the greatest. The greatest gift to me is having children who have pulled me so beautifully into the present moment every single day, because we're already living it. And it's what people are seeking out. They're pining for ways to live in the present moment. Right. And what a gift it is to be the person that is charged with living in the present moment because of their children being who they are.
• 29:04
  Speaker B: See all like this because I feel this. You see the life, the easy life that we. That was taken from us.
• 29:11
  Speaker A: Mm.
• 29:13
  Speaker B: And. And there's always still some pull to that. Right. You still kind of like, gosh, it would be so easy. That would be so nice. Look at what they get to do. And then. Yet I don't. I love that my life requires me to love and live so deep.
• 29:30
  Speaker A: Yes. Yes. What is. What is one thing that you'd like to leave all listeners with before we. Before we go?
• 29:36
  Speaker B: Well, the bottom line is that all things are possible for the ones who believe, and that is Mark 9:23. That is the promise of the Lord God himself. And when you understand that everything comes from faith, from imagination, you get to participate in creating your life by hoping and believing and all of the promises of God and presume competence, because we are souls. We are not. We are. Our bodies are just vessels. So believe, believe, believe.
• 30:05
  Speaker A: Katie, thank you so much for sharing yourself, for sharing Houston, and really for being so expressive and what a gift it is for you to be as expressive as you can to. That's a way that you're giving as well. So thank you for joining me here today on Instones. I can't wait to share this with all of the listeners.
• 30:25
  Speaker B: Thank you so much.
• 30:26
  Speaker A: All right, well, until next time, here on the Inchstones podcast,