In this heartfelt episode of “The Satisfied Soul,” Pastor Sarah Jane delves into the intricate relationship between faith and mental health. Bringing her expertise as both a pastor and a clinical therapist, she aims to untangle messy theology and help believers discover how God’s word can bring direction, safety, and mental healing. This episode, however, stands out as it brings a special guest into the fold—Alicia Jones, a historical Christian fiction author and a mother navigating the complexities of raising a child diagnosed with autism.
Alicia’s journey is nothing short of miraculous. Her first son, who she lovingly refers to as a miracle baby, faced numerous challenges even before birth. Diagnosed with level two autism and ADHD, Alicia’s son has taught her and her family the importance of early intervention and the power of tailored support. Autism, often misunderstood, is a spectrum disorder affecting social skills, communication, and behavior. Alicia shares her personal experiences, shedding light on the daily struggles and triumphs of raising a child on the spectrum.
One of the most compelling aspects of this episode is the discussion around the misconceptions about autism. Many people still see autism as a mental handicap, but Alicia and Pastor Sarah Jane aim to dispel these myths. They emphasize that autistic individuals often possess incredible intelligence and unique abilities. Alicia shares stories of her son’s challenges with speech, feeding, and sensory processing, but also highlights his strengths and the joy he brings to their family.
Pastor Sarah Jane also shares her experiences with autistic individuals in her community. She recounts heartwarming stories of people who, despite their diagnosis, have left a lasting impact on her life and the lives of others. From a young man who could recall the day of the week for any given date to another who found solace and connection through music, these stories serve as a powerful reminder that every person, regardless of their diagnosis, has value and potential.
The episode also touches on the importance of community and support. Alicia and Pastor Sarah Jane discuss the role of the church and the broader community in supporting families with autistic members. They advocate for a more inclusive and understanding approach, where everyone can feel seen and loved.
As the episode concludes, Pastor Sarah Jane invites listeners to join them for the next installment, where they will delve deeper into the misconceptions surrounding autism and explore other related diagnoses. She reminds us all that we are loved and seen, encouraging a spirit of compassion and understanding.
Tune in to this enlightening episode to gain a deeper understanding of autism through the lens of faith and to be inspired by the resilience and love that define Alicia’s journey. Whether you’re a parent, a caregiver, or simply someone looking to learn more, this episode offers valuable insights and heartfelt stories that will stay with you long after the podcast ends.
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>> Pastor Sarah: Hey, listeners, this is Pastor Sarah Jane. I have a very cool topic to talk to you about today, and I have a co host that has been in my life for quite a while. well, I’ll tell you about that in a second. My co host is Alicia Jones. She is a mom of two boys and a wife. she lives somewhat in the midwest. Isn’t it considered midwest?
>> Alicia: I think it’s considered like southeast.
>> Pastor Sarah: Okay. we met each other when you were. I think you were 17.
>> Alicia: I was. I was pretty young, yeah.
>> Pastor Sarah: Yeah. She actually was a. And still is, but was, a, historical Christian fiction author, and she. I met her at a homeschool convention because I was homeschooling my kids, and I just loved her personality. She told me about her books, and I bought, one of her books at that convention. It was her Alamo book, remembering the Alamo, right?
>> Alicia: Yes.
>> Pastor Sarah: And I loved it because, Alicia, you do such a great job. Okay, first of all, let me just say I’m an uber geeky historical person. I go full geek out whenever we get to go anywhere that has any history whatsoever. When we did our east coast trip, I had to stop at every single historical space there was, and I’m just in awe of the space. And my kids are like, can we go now? And my husband’s like, seriously, babe, let’s wrap this up. But I loved it. Aside from Gettysburg, they were all enthralled with Gettysburg. That’s totally different. But, I remember reading, remembering the Alamo and really getting very geeked out by the verbiage that you use, the dates and timelines that you put in there. And then shortly after, our family went and visited the Alamo, so it was like everything was very fresh in my mind, and it was beneficial for me to see the things that were in this fiction kind of novella, from your perspective. So I really appreciated that. Alicia actually also, edited and, I guess, beta tested, and helped support, the promotion of my book, too. So she’s been a really good asset for me.
And so I just want to introduce Alicia.
>> Alicia: Well, thank you. Thank you for having me. And I remember the first time we met, and, well, it seems like forever ago. I guess that would have been, like, 16 ish years ago, so that would have been a while ago. And, yes, that book, Remembering the Alamo, that was a lot of fun to write. It was also really difficult because there were so many, I guess things that people think are true about what happened at the Alamo that simply aren’t true. They’re just kind of like legends that got passed down. And so it was a really fun book to write, and, yeah, I hope to one day return to writing Christian historical fiction, but right now, I’m just pretty busy with the boys.
>> Pastor Sarah: Yeah. you know, being a mom takes back seat to our own personal pleasures a lot of times. Yes, it’s just the season that we’re in, and then you get to where your kids are a little older and you got a little bit more space to do other things. And so we just have to enjoy the little seasons that we have because we won’t ever get them back. Like, this is. This is the extent of what we get. And when we’re out of that season, as we’re in a different season, we won’t get to go back to that previous season, so.
>> Alicia: Right.
>> Pastor Sarah: you know, the other thing I was thinking about was. I don’t know if you remember this or not, but, you had invited me, well, my husband and I, to your wedding. And, we had foster kids at the time, and I was, like, I was fully ready, excited to come to the wedding. I had bought you a wedding gift, and it was all the way out in Edgewood area. and I had bought you a wedding gift, and I had gotten some sort of really bad version of the flu. I mean, I can only equate it to the equivalence of COVID when it first hit, but it was prior Covid. It was pretty, like, two or three years pre Covid. I don’t know, something like that. it was early, but, I remember getting so sick that I knew I couldn’t function at the wedding. I also didn’t want anybody to be around me in case something was contagious. But I felt so bad because I wanted you to have the gift I bought you. So myself. My husband was out of town at the time, myself and the foster kids. And my kids drove the van all the way out there so I could drop the wedding gift off to you. And you look so beautiful. And, I wanted to celebrate with you, but I’m like, all I can do is give you a gift. Like, I’m so sorry.
>> Alicia: That was a crazy day. So I have, like, most memories are pretty blurred at this point, but, yeah, I do remember, you know, just feeling thankful for, you know, the gift and the thoughtfulness and all of that.
>> Pastor Sarah: It was just starting to hit me. And I knew that if I went, I would be down for the count. Like, I would. I really wasn’t sure if I’d be able to drive home, really, because.
>> Alicia: Right. Yeah.
>> Pastor Sarah: I started to feel so bad as I was driving to you. I’m like, gosh, there’s no. There’s no way I can stay for the wedding, right? And sure enough, when I finally got home, I actually passed out on my bed and my sweet teenage foster daughter. At the time, I was, you know, I don’t know if you’ve ever had the flu so bad that you’re, like, under the covers and you only have, like, your eyeballs portion poking out. Like, everything has to be undercovers.
>> Alicia: Yes.
>> Pastor Sarah: How I was. And we had a foster child that was an infant at the time as well. They were only, I think three months old. So I had a teenage foster kid. I had a three month old foster kid. And then I had two of my kids, at home at the time, and this teenager, because I was so gone, took care of all the other kids for me for, like, three days straight.
>> Alicia: Wow.
>> Pastor Sarah: Yeah.
>> Alicia: You were so sick.
>> Pastor Sarah: I I, you know, I just couldn’t believe that it hit me. I mean, it was like a really fast. I started feeling uncomfortable that morning and thought, you know, if I feel okay, I’ll just go. But as I was driving to your wedding, I was like, there’s just. There’s no way. I just have to give my,
>> Alicia: And, you know, I was actually having, a pretty bad autoimmune attack that day, and, I went on to have several more attacks during my honeymoon. So I feel your pain a little bit. Yeah, I mean, rough day there myself.
>> Pastor Sarah: It’s definitely difficult when you are trying to enjoy something and there’s some sort of hindrance, or what appears to be a hindrance preventing you. For July, I wanted to address, um, the autism spectrum
And that’s kind of the lead in. Of the topic that I wanted to discuss with you today. for those that know you, it’s no secret that you have been trying to. You’ve been in a weird adventure. Let’s just say that you’ve been trying to maneuver in a weird adventure for your family. Can you explain what you recently got informed of?
>> Alicia: Well, there’s been all sorts of craziness for our family. but this is the specific thing, is, my first son, who is a miracle baby, he shouldn’t have made it. He almost didn’t make it several times during the pregnancy. But, about. I guess we’re coming up on two years ago, he was diagnosed with level two autism, and there’s a bunch of other diagnoses he got at the same time that go hand in hand with autism. And then last summer, he was also diagnosed with ADHD.
>> Pastor Sarah: Yeah. So autism is mainly a comorbid diagnosis. There’s other things that typically go along with it. and so for the month of July, I really wanted to address, the autism spectrum. First of all, how other diagnoses kind of go along with that or can even be, misconstrued as an autistic diagnosis. the effects of it, the, supports that are needed, the feelings the parents have, or how the kids manage being autistic. and so that’s really what I have you on here for, is, because I have seen over this relatively short time, it obviously has not felt like a short time, but relatively short time that you have been dealing with this. I have seen the struggles with our communication, in our messaging, but also on your posts and, you’ve messaged me several times about questions to verify, is this okay? Should I be asking about this or what? Would this work in this kind of situation? And so I really kind of wanted to bring all that out, right? Because I have, as a therapist, seen many parents have a hard time with the word autism or autistic attached to their child. And, so first I just really kind of wanted to explain from a technical term what autism was, because people, I think, have a very wrong view, I guess. I mean, I don’t really know how to explain. They’re just under the assumption that it’s one thing instead of another. people have been believing, that autism is like a mental handicap. you know, years ago, and we certainly don’t use these words anymore, but years ago kids were considered retarded, right? And that they can’t, they had, you know, like, they can’t function. the national association or National Autism association actually says that one out of 36 kids are diagnosed with autism. That’s a really significant percentage. that 40% of those don’t even speak. And so there is a, so there’s a reason why it’s called autism spectrum. it means it’s like a scale of functionality, basically. So there’s a low level of functioning for autism. And there’s a high level of functioning for autism. autism is diagnosed in kids as young as three. It can affect their social, abilities, their communication abilities, cognitive functioning, how they interact with leisure activities or play activities. It doesn’t appear to be like that of a typical child. There’s, there’s things that need to be put in place for them to have the enjoyment factor. the main thing to remember about autism is that the earlier you can get interventions in place, the better it is for the kiddo.
And so, I mean, yeah, you know, I want you to tell a story specifically about, your son’s. And I want to say, okay, I’ll just, I’m trying to figure out how to phrase this without giving up too much information, but you participate in something weekly and your son was struggling with how to be able to participate in it. And so you and I had a conversation about what he needs. And this is really going to lead into other weeks worth of topics too, but just kind of to give the listeners an idea of how, you know, his functionality is a little bit different and needs to be looked at different than the average child.
>>Alicia: Well, for starters, David did not start speaking, really much at all until he was close to four and a half. and when I say not speaking, you know, he didn’t do any of the typical one word or two or, you know, he just didn’t speak. and so that in itself is just very difficult because a child can’t tell you if they’re in pain or, you know, what’s wrong. All they can do is really scream, and throw their body around if they don’t have the words to tell you what’s wrong. You know, that’s, that’s one thing that we’ve had to work through is just he doesn’t have words and now he’s speaking, but he is not conversational. And so, you know, it’s still a struggle to accommodate his speech. I go with him everywhere, and I’m kind of his translator. I know what he’s trying to say. And if sometimes he can’t form a phrase to help him in, you know, like swim lessons, for example, you know, he might need me to, you know, interpret for him at swim lessons. another factor is he has a feeding disorder that goes hand in hand with autism. He does not eat a lot. his brain is actually afraid of certain colors. That is very common for, for an autistic child’s brain to be afraid of certain colors of food. And brown was the preferred color for so long. Just if it’s toast or it’s like a cracker, we’ll eat it, but if it has a different color, we’re not going to eat it, we’re not going to look at it, and we’re going to run away screaming if you put it on the plate. So feeding has been an accommodation that we’ve needed to make. honestly, there isn’t anything that autism does not affect. It affects everything. Sleep, sleep has been a real struggle. He doesn’t sleep, honestly. He, doesn’t sleep much at all. He stopped napping very, very early and we’ve had to work hard to figure out how to help him to sleep. weighted blankets, that was a whole journey to discover that he needed that deep pressure on him while he sleeps. So weighted blankets, he needs special clothes, special cups. You know, he didn’t hold a fork or a spoon until real recently, and he’s five and a half. he didn’t have muscle tone. he’s not potty trained. So we do have special accommodations for what kind of clothes he wears and his pull ups. just, just things of that nature. So basically, anywhere we go, he needs special food, he needs headphones he needs special clothes, just accommodations to get through life because he’s very easily overwhelmed. It, was explained to me that if you could hear every tiny sound in the world and see every tiny light change or notice every bird all at once, that’s what his brain does. It doesn’t tune anything out. He hears everything, sees everything all at once. So that leads to overwhelm and big emotions. And, you know, it’s difficult because he can see everything and just like I said, he can’t tune it out. And so that’s why we have to have so many accommodations for him, is just to help him and to realize that he’s not being difficult. It’s his brain never lets him rest or never gives him a break.
>> Pastor Sarah: Yeah. So I don’t want you to get too far into the details of that because that’s going to be another topic. But I want to try to, give a little bit of some examples for people. and then we’ll pause and break for next week when we record. But, I have had several autistic people in my life. you know, there’s, there’s a movie that kind of, I wouldn’t say gets it 100% correct, but does a pretty good job of, kind of identifying a high functioning autistic person, or at least average, ah, level functioning of an autistic person from like, the 1980s. It was called rain man and it was, Tom Cruise and, oh, gosh, I totally forgot Dustin Hoffman. Dustin Hoffman was rain man or was the brother, that had autism. And, you know, the movie itself was light hearted and kind of jovial, but the behaviors of this adult male with autism was kind of spot on. Okay. For somebody that was a higher functioning autistic person. I have had, like I said, several people in my life that have had or that are diagnosed with autism. We, as a church, years ago, we had a young adult male who. He melts my, my heart. Even to this day, when I think about him, I just, I just, he’s so much. He, I just love him. he, very, he was very socially awkward in that it was difficult for him to give hugs, difficult for him to, empathize or really emotionally connect, with people at a social norm, way. But he was so smart about some very interesting things. Like he’d ask you, when’s your birthday? And I would tell him my birthday. And he could tell me, I was born on a Monday. And I would google, and sure enough, I was born on a Monday. And then he would tell me, when you were 25, it was a Thursday, you know. and he could do that with anybody. You just tell him his birthday, and he could tell you what day you were born on. He could tell you the dates of birth and the dates of death of famous people. And to me, I was just. I would be sitting there in awe because this is a person who the majority of the world would say has a negative, appearance to the world because he’s got the diagnosis of autism. And yet my brain can’t do that. I cannot function level. And so there are autistic people that your brain, like you said, there’s so many things that are happening all at once, and it’s like listening to every single noise you can think of that’s so overwhelming to their brain. Their brain opens up in spaces that ours doesn’t. And so high functioning autistic people have abilities that the average Jane doesn’t, you know? And so, I mean, he just blew my mind. And then, I had another autistic, ah, person that was in my life, in our more recent church, who was on the lower end of the spectrum, meaning he did not speak, he could not walk. excuse me. When, we first met him, he was just completely wheelchair bound. No, real interaction. But the more we were around him, he displayed affectionate type things, like, he would rest his head on me. He’d get smiley when he saw me. He smiled when I sang. He. Whenever I would sing, he would stare at me, on the stage. And just very much his face lit up hearing me sing. His face lit up when he saw me. he knew who I was and knew that I was important to him. And even when he would be at my house, he would rock himself back and forth to move his wheelchair to get closer to me. I loved him. Loved him so much. Ah, a couple of years ago, he passed away and. Yeah, he passed away. he got, basically got sick and aspirated and wasn’t able to recover. but I got to be the one that spoke at his funeral, and I got to sing for him.
There’s a misconception that people with autism are not actually smart
And before he passed away, when they said they were about to pull his plugs, I was at the hospital reading scripture to him, praying over him, and singing some of his favorite songs to him. And then his family came to unplug, all of his machines, and I sang him into heaven.
>> Alicia: Oh, wow.
>> Pastor Sarah: And I mean, and he was very low functioning in, conjunction with the standards. Like, if you look at the spectrum, he was on the lower end of the, So I just. I give those examples to show people that there are, still personalities, still character qualities, character traits, still functionality and things that are, doable. And so please don’t write off a person just because of their diagnosis.
>>Alicia: Yes. And I think that is a big misconception in society in general, is that people feel like if you’re autistic, then you’re not actually smart. But it couldn’t be anything further from the truth is, many, many brilliant individuals in the past, would have been diagnosed with autism if they live today. And so many autistic individuals are extremely intelligent and just. They’re just incredible people with incredible minds. And, yeah, socially, they, think about life a little bit differently, but academically, there’s just so much intelligence there.
>> Pastor Sarah: Yeah. So, I’m glad you guys got to join us on week one. Next week, we’re going to actually talk about misconceptions, in connection with other diagnoses, too. And hopefully you join us and hear more from Alicia next week. thank you again. Just a reminder, you are loved and seen. God bless.
Tune In Next Week for Part Two!