Join us in a touching conversation with Amy and her daughter Lizzie as they share their experiences with 18-year-old Mathew, who was diagnosed with autism. Amy discusses the challenges of raising Mathew, including how eliminating certain food dyes helped reduce his aggressive behavior. Lizzie shares insights on being an older sister to a sibling with autism, highlighting the unique bond they share. This episode offers a candid look into a family's journey with autism, filled with challenges, love, and resilience.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/NLxFbGl-0vY
[00:00:00] Amy: Matthew at that time was eating a lot of snacks. He loved the little jelly fruit snacks. Skittles and M&M's. Ironically, that was one of our reinforcers for his behavior. Oh, you're doing such a great job. Here, have some M&M's. I had no idea that the dyes in that candy was then in turn making his behavior worse.
[00:00:26] Carole: That was Amy Nichols. And before we go into the interview, I wanted to explain how I actually met Amy and her daughter, Lizzie. It's an example of how I meet many of my guests in a very random, spontaneous way. And I think that's a lot about what this podcast is about, the idea of connecting with other people who you might think you have nothing in common with, or you really don't know until you start hearing their stories.
So, before we go into the formal interview, I will tell you a little story. And then we'll hear what Amy and Lizzie have to say.
I was walking into my home, and I saw two people lying on the driveway and I thought to myself, this can't be safe. So, I told the two people that they might want to get up and get out of the way of the oncoming car. And that's how I met Amy and her daughter, Lizzie. I started to speak with Amy about her son, Matthew, and I knew that that was a story that other people should also hear.
I also included Lizzie as a guest on this podcast episode because I think that siblings have a lot to share about their experience when there is someone in the family that's been diagnosed with autism. I'll let Amy introduce herself.
[00:01:50] Amy: I live in Carmel, Indiana. I am 51 years old, and I am a virtual teacher. I've been in the education field for 22 years. I have three children and I'm married to my husband, Greg. And my oldest son is 22, graduated from college. And then my son who has autism, who will be 18 in February. And then my daughter here with me is Lizzie.
[00:02:14] Carole: I asked Lizzie to describe her mom, and this is what she said.
[00:02:17] Lizzie: So, this is my mom, Amy Nichols. She's been a teacher all my life, so that's what I've always known her as. And she is one of the best moms out there. She is very strong and patient. And definitely inspiring for our community and friends. I've definitely learned a lot from her in my short time on this earth so far. We are very close.
[00:02:40] Carole: That's great. So now that you know a little bit about Amy and you've heard Lizzie's voice, I want to welcome you all to Wisdom Shared, where parents and children are the experts and where connection inspires change. I am your host, Carole Blueweiss. Welcome, Amy and Lizzie. I met you guys literally on the ground, in a driveway, as you were relaxing on your vacation, sunbathing.
The randomness of our meet was unique, and I was very lucky because as soon as I started talking to you, Amy and Lizzie, I knew that you guys would have so much wisdom and interesting stories to share with my audience. Not only are you in the education system, but you also have a son who was diagnosed with autism. Autism can range from so many different ways of presenting. It's just a word that describes a whole lot of people out there.
[00:03:37] Amy: I wish that you could see him right now because he is six foot tall. He has a beard growing right now. We try to keep him clean shaven as much as we can, but it grows pretty fast.
But imagine that and then imagine him sitting in front of Barney, the dinosaur, and singing and clapping his hands and truly behaving as a two- or three-year-old, but yet he has a beard. Before we did this podcast, I was looking at his baby book just to look back at some things and I saw a little entry where I had written that he was saying E-I-E-I-O, and I was so proud of him.
I think he was like one and a half or two when we were singing Old MacDonald Had a Farm. And I had to laugh because that's still one of his favorite songs. So now he's 18, and I still love hearing him sing E-I-E-I-O, because it's still a favorite song. So, I guess he's forever a child. He's my man child.
[00:04:36] Carole: How did you find out that maybe there was something that needed further investigation?
[00:04:41] Amy: When my son was born, it seemed like a very normal birth. He passed all those prenatal tests. We brought him home and thought everything was just fine. And then at two weeks old, he got RSV, which is a very scary respiratory infection. And he was hospitalized for two weeks. During that time, there was an outbreak of RSV in our town, and the hospitals were bursting at the seams.
And I do recall that he was on an oxygen machine and many times that oxygen machine alarm would go off, meaning that he had low oxygen. But because the hospital was so busy, sometimes it would take hours before nurses would come in. When he came home from RSV, he was limp. He did not have good muscle tone.
He wasn't meeting his milestones. His cry was weak. And for a while, we thought it was just him trying to bounce back from the RSV. And I talked to my pediatrician several times and he suggested that we get a CT scan of his brain just to see if there was anything that just didn't look right. So, we got the CT scan and it came back just fine.
As we know, moms seem to have an intuition and I just felt in my heart that something wasn't quite right. So I spoke to my pediatrician again and this time he said, you know, if you really want to take this further, why don't you go to Riley Hospital, which is one of the best hospitals for children in Indiana, and get an MRI done and then they can look at things a little bit closer.
So, we got the MRI done and as soon as the neurologist put the CT scan up and the MRI, he said that, yes, there indeed was a major issue and it showed up on the CT scan. So, he did not know how this other hospital missed that. And the MRI was really bad news.
And he was very kind, very compassionate. But he said, honestly, I don't know what the future is going to look like for your son. I don't know if he'll ever sit up. I don't think he'll ever walk. I don't think he'll ever talk. It was just a very dark, grim outlook. And honestly, my husband and I were just in a fog. We weren't expecting that at all.
[00:06:47] Carole: He's your 18-year-old now, right?
[00:06:49] Amy: Yes, he is my 18-year-old. So, at that point, Matthew was just under a year old. So, we immediately reached out to First Steps, which is a government program that brings therapists into your home, speech therapy, occupational therapy, physical therapy.
So, we started doing that right away, four to five times a week. At that point, I took a step away from my career as a teacher and decided that I would take a few years off because I wanted to be in the home with him. And even though the therapists were coming so frequently, we weren't seeing a lot of progress.
And it was very discouraging because they would work tireless hours and they were just wonderful and so creative, bringing in all these toys and fun things, but we just weren't getting anywhere. But what we noticed was as soon as the therapist would stop working on one skill and move on to another, Matthew would eventually get that skill.
It just might be 6, 8, 10 months down the road. So, his delay was more like a year to a year and a half behind every single thing we were trying to do with him. So that was really hard to deal with because we started thinking like, how is this going to manifest into the future? What is that going to be like? What is that going to look like?
[00:08:05] Carole: How did you feel about the fact that he was learning, it just was taking longer than was considered the correct milestones?
[00:08:12] Amy: It gave me hope that he was going to, I don't want to say come out of this, because as a teacher, my gut feeling was that we have a special needs child and he's probably going to struggle forever. But it definitely gave me hope that he will hopefully someday run on a playground. The physical therapist was able to help with things like that. And the one thing that kept coming back to me, though, was cognition. I could just tell that his cognitive level was very low. And ironically, that is exactly where we are now.
He's 18, but his cognitive level is that of about a 3-year-old. So even though his physical strengths improved, his cognitive level did not. And I think it's important for me to share, too, that his diagnosis, he has moderate to severe decreased white matter of the brain globally.
And so sometimes people will have decreased white matter in one section of the brain. And so, then they can focus on using other parts of their brain to compensate for that. But my son, it's globally. So, every aspect of his brain is severely weakened. And so we have to find different routes to fire those neurons and to try to help him learn things. Ironically, socially, he's really strong, and I think that there is a common misconception that autistic people are introverted, but brilliant. And Matthew is the opposite of that. He is extremely social, but very low cognitively.
[00:09:46] Carole: How old was he when he had that diagnosis?
[00:09:49] Amy: Strangely, we did not get the autism diagnosis until two years ago because he was so strong socially through the years and the school system, they never tested for that. They said, we don't really feel like we need to do that because his personality is so strong.
We just think he is moderately mentally handicapped. But it wasn't until puberty set in that I started really seeing those textbook autism characteristics such as the flapping of the hands when he's overwhelmed. Or the rocking back and forth. He never had that before. He was just a very low academic child with low muscle tone.
But once he hit puberty was when we could really tell that he was showing signs of autism because he did have those very distinct behaviors that you see. The other thing that really started in puberty is he would start having meltdowns and that's one of the most difficult things, I believe, in raising an autistic child is the meltdowns that can escalate and become aggressive.
So, when all of that started was when I really realized, wow, we need to go back to the drawing board. We probably need to have him diagnosed, retested, and see what kind of things are out there to help us because we were feeling so overwhelmed. He was tall and strong. He was pushing. If he got really upset, he would punch a hole in the wall. And so, it became a big problem. So, we knew that we needed to get extra support.
[00:11:13] Carole: How did you go about getting support?
[00:11:16] Amy: I went back to our physician, and I said, you know, I definitely think he needs to be retested. And he suggested that we go to the school system and ask to have the whole battery of tests done again.
And at that point he had reached an age where they don't normally do that in the school system. So, they suggested that we do it outside the school system. And I'm actually glad that we did that because it was during the whole Covid time that we were going through. And so we were able to do it virtually, which I think was a lot easier on him.
They could just tell by the questionnaires that I filled out. They did ask for a lot of video, which I was happy about because that's a great way for me to be able to show what I see happening at home. So, I submitted a lot of videos of his behavior.
[00:12:02] Carole: And then at the end, you had a diagnosis.
[00:12:05] Amy: Yes, so then I got the autism diagnosis, and it really didn't change a lot for us other than there's a lot of autism support groups that you can join. I would say probably the best support that I have gotten is from online social media groups like Facebook groups for special needs parents. I would just read and read for hours all different things that people have tried. Some things worked, some things didn't, and it made me sad too because I know that there are a lot of people out there that at that point, they give up and they put their child in a home because they simply can't do it.
They might be a single mom that's working long hours and they can't come home and have their child pinching and pulling hair and putting holes in the walls. I'm very blessed to have a very supportive husband that helped me. And we're also very spiritual, so we turn to prayer a lot. Because we didn't know what else to do.
You know, we were so overwhelmed, but after a lot of prayer and a lot of research, I came across the connection between food dyes and autistic children. And wow, was I shocked, because Matthew at that time was eating a lot of snacks. He loved the little jelly fruit snacks. He loved Goldfish. We were giving him Gatorade.
Just a lot of the things. Oh, Skittles and M&M's. Ironically, that was one of our reinforcers for his behavior. Oh, you're doing such a great job. Here, have some M&M's. I had no idea that the dyes in that candy was then in turn making his behavior worse.
[00:13:38] Carole: Now, was it the dyes for sure? Could it have been the sugar?
[00:13:42] Amy: We found out very quickly when we eliminated red, blue, and yellow dye that we saw a huge change in his behavior. And even some like chocolate milk has red dye, which is such a strange thing. Some applesauces have dye. We just couldn't believe it. Within probably two weeks, we saw a huge change.
And we did not eliminate all sugar. He still eats things that have sugar in it. He'll have cookies. He just doesn't have cookies with red icing. He'll have brownies, but he just doesn't have sprinkles on top. It is quite amazing. We went probably, I would say, six months without any dye. And we saw a huge change. And then last Christmas, the night before, we had a nice dinner for Christmas Eve, and he had peppermint ice cream.
I wasn't even thinking about that being red dye, I mean, I should have, but that next morning was some of the worst aggressive behavior we have ever seen. And I was racking my brain thinking, what did he have, what did he have? And it hit me that he had peppermint ice cream. So, I went back and looked at the container and the ingredients and sure enough, that was like one of the top ingredients was the red dye.
[00:14:49] Carole: That there was some allergy or some reaction to his behavior with the dye.
[00:14:53] Amy: In one of the support groups, I was seeing over and over parents saying, eliminate dyes, eliminate dyes, over and over. So, then that caused me to go back and research it. And I found out that in Europe, many of those dyes are against the law. They know that it has a connection to children's behavior. So, they aren't even allowed to have it anymore.
Yellow number 6, blue number 1, and red 40 are the top ones. And I had read that the FDA in the United States admitted like 10 years ago that they knew that it indeed has a connection to children's behavior. And it's not just autism, it's all children's behavior. It causes hyperactivity, autism. It manifests more in aggressive, hyperactive behavior. So, it's just very frustrating that they know, but, you know, they have not taken that out here.
[00:15:48] Carole: Wow, that's so interesting. You have to wonder that so many children are being diagnosed with ADHD and hyperactivity and there's been such a debate about whether it's because it's being overdiagnosed. And then now one could ask the question, is it their diet?
[00:16:04] Amy: And what's interesting is if you look now, for instance, Goldfish. You can get all different colorful Goldfish and now on the front of the packaging, it says colors sourced from plants because they have felt the pressure to change that. So that's a great thing.
I know Sun Chips; they took the dyes out of all of their chips. I'm pretty sure that Kraft Macaroni and Cheese has a separate type of dye-free mac and cheese now. Another thing that I didn't realize is many medicines have dye in them, so like Pepto Bismol or cough syrup. We used to give Matthew Benadryl when he was hyperactive because our physician suggested that.
I noticed when I would give him the Benadryl, it got worse. But then once I started studying about the dyes, the Benadryl pills are pink and they're full of red dye. So now I buy dye-free Benadryl and I buy dye-free ibuprofen and dye-free Tylenol so that I'm not counteracting what I'm doing. When I'm trying to heal him from something else, I'm not giving him something that's going to make him aggressive.
[00:17:16] Carole: Wow. If there is dye in the food, will it say it on the label? And what are the different ways it would say it without saying the word dye?
[00:17:24] Amy: If it is medicine, it's usually going to be under a section called inactive ingredients. So, if you're looking at Tylenol or ibuprofen, you're going to want to read the entire thing. And sometimes the inactive ingredients, they're pretty sneaky. Sometimes you have to open the tab at the bottom to look even closer on the carton. So, they're not always listed right under the main ingredients, but I always look for inactive ingredients. On food, it's usually listed pretty far at the top because food ingredients, they have to list it in order of how much of each ingredient is in there. And you'll be amazed at how many things like red 40 might be the first thing listed.
[00:18:03] Carole: Do you think that your doctors are or were aware of this?
[00:18:08] Amy: Some of them are. It depends on the doctors. I've come across some very holistic physicians. And the first thing they say to me is, what's your son's diet like?
Let's talk about his diet because they know that there's a huge connection between not only food dyes, but just your gut health in general. A lot of autistic kids get constipated very easily because they're agitated and anxious. And so, a lot of doctors will talk about gut health with you right away.
But then, of course, there are some doctors that will just quickly write a prescription for something and they're not trying to dig deeper into it to see if there's anything I can do first to help my child before I give him a prescription. When my son was first diagnosed with special needs, I was very open about it.
My husband and I have never been in denial. From the very beginning, we were just like, okay, this is the gift we've been given from God and we're going to give him the best life we can. But I've noticed that a lot of people really struggle from day one and they are constantly trying to cure their child.
So, I've known people that fly all over the country to different centers and just try out everything they possibly can to cure their child of autism. And I'm not saying that's wrong. We just approached it a little differently. So, we have tried lots of different things too, not so much to cure him. We want him to be peaceful and not be so agitated and anxious and aggressive.
So, we take the road of what can we do to make his life more peaceful and our life more peaceful, knowing that he does have autism and he's going to have it forever.
[00:19:48] Carole: Lizzie tells us her point of view as Matthew's older sister. You described a lot of how he treated you or perceived you compared to his older brother. How did you view him?
[00:20:00] Lizzie: I would say when I was little, I probably, I don't want to say I struggled with understanding that he was an autistic child, but I feel like I remember when I was little, I really just saw him as my annoying little brother.
I would get frustrated because our relationship felt so normal to me, like all of my other friends with their siblings. And it was hard because I wanted to get mad at him for playing with one of my toys when I wanted to or getting into my room and messing with my stuff. I remember I really struggled with that growing up.
I would be very frustrated with him a lot, and especially when I was little, I didn't understand why my parents would always just let him do whatever he wanted. I felt like he got more attention than me because he really was only a year younger than me. And so, I was fighting for some of that attention too, which was not true at all.
We still had a wonderful family dynamic and I love my parents. I was with them all the time, but I definitely remember being very frustrated with him and being around him when I was little.
[00:20:59] Carole: Were you ever scared when you saw his behavior?
[00:21:03] Lizzie: Yes. We were lucky that his behavior being that aggressive didn't really happen until probably only a couple years ago. I wouldn't say I was scared; I just feel like it was more of a worry of like never really knowing how he was gonna act. I would get really frustrated for my parents specifically because it's hard to see your family go through that because he never really would act aggressive with me. It was only really towards my parents.
And so, it was just hard for me just to stand there and watch. The couple of years where he was consistently being aggressive was just hard for me to get through because I felt really bad for my parents. But since he was never aggressive towards me, I never really had that fear of him specifically.
[00:21:44] Carole: Did you go to therapy for your feelings that you were having?
[00:21:48] Lizzie: No, not really. I mean, back to our family being, especially in those hard years, we just really focused on a lot of prayer. And the good thing was that Matthew loved going to church. And so that was a good reset for us every single week to go to Mass and be there together. I would say that was definitely very therapeutic for our whole family.
[00:22:07] Carole: He's now 18. How do you see his future? Do you see him living with you or living somewhere else?
[00:22:16] Amy: I definitely think he will probably live with us. He's very, very innocent. He would go with a stranger in a second because he loves people, and he doesn't have any fear towards anything. So that's very scary.
I think if we ever found the perfect situation where he could live in a home with people that we personally know and maybe have around the clock care of people that we could trust, we would possibly consider that, but right now we're just thinking, you know, he's probably going to live with us. He'll have some little job.
He's so joyful and he's so fun. He loves to clean. He loves to do little tasks. So, we could see him bussing tables or being a greeter, you know, something where he can use his social people skills.
[00:23:07] Carole: Do you have any advice for other brothers or sisters of children with different needs and different personalities?
[00:23:14] Lizzie: Yeah, I would definitely say I totally understand that perspective of growing up and being frustrated that that sibling is going to get more attention. They're going to need more care from your parents growing up. And I guess I would just advise everyone to be patient. I know that's hard and when I was growing up, I was not patient with him. Now that I'm older, I really cherish that relationship a lot more than I did when I was little.
[00:23:38] Carole: Anything you wish you knew then that you know now to tell other families?
[00:23:43] Amy: Yes. I have lots of things I could share, but I'll try to limit them to the top things. On aggressive behavior, the biggest thing that I have learned is to step away from it. And that took me years to figure it out because I was so nervous that he was going to hurt himself or hurt something in our house that I would go towards him. And autistic children feel energy at a whole different level. So, what I did not realize was my nervous energy was making it so much worse because he was then tuning into my energy, which was making him even more upset, which is hard to understand.
But I'm very an energy person. I'm very in tune to people's energy. So that comes very natural to me. But it all makes sense that he could feel my energy. I was a nervous wreck. That made him worse. So, what I finally realized was he's really not going to hurt himself. The worst thing that's going to happen if he tries to punch the wall, his hand might be bruised, or it might bleed a little.
If he bangs his head, we found out pretty quick, it's okay. He bangs his head very hard, and you would think he's going to have something horrible happen, but he never did. So, I just decided that when he started that, I was going to give him his space. So, I would literally say very calmly, I can tell you're upset, I'm going to leave for a little bit and I'm going to come back when you've calmed down.
And whether he was upstairs, downstairs, wherever he was, I would very calmly leave and I would walk out the front door. And instantly, he would change his demeanor and it wasn't so much that he was doing it for attention because usually autistic children don't have meltdowns for attention.
That's just, it's not a behavioral issue. It's an internal issue. They just have so much going on in their body that they have these meltdowns. But I think it made him think, oh, now I'm nervous. Mom's gone. I need her. And it calmed him down. Was it that, or was it literally my nervous energy exiting the building allowing him to calm down?
I don't know. But that really works for us. And there were times when I'd walk out the door. And I would hear him punching something in the house, and I would think, oh boy, here we go. But I just kept reminding myself, he's not going to hurt himself. If he puts a hole in the wall, we can fix it. It's okay. So that's the way I started handling it, and the beautiful thing about Matthew, too, is, as soon as he has that, he feels horrible about it.
So he will instantly start saying, I'm so sorry, Mommy. I love you. I love you. I'm so sorry. Get the tape. He'll always say, get the tape. He wants to fix the hole with tape. He thinks he can put Scotch tape on the wall. But he's so, so remorseful. And that helps quite a bit. Helps you forget and move on. But that's probably the biggest thing that I learned about those meltdowns.
Also, if they happen in the car, that's very scary because I have been driving before when he starts like trying to rip my hair out because he's so mad. So, I have decided that from now on, if that happens, I just pull over the closest spot I can get safely. Pull over and I step out of the car. I leave him in the car and I say I'm going to take a walk.
Of course, I don't go far because I can't leave him. It helps to calm down. On our way on a trip just recently, he had one. And we pulled over just an abandoned parking lot and it was a safe spot, nobody was around, and I let him get out and he just screamed and cussed and kicked a few rocks and I just stood there and I said, oh, this is good, this is good.
If you're upset, go ahead. You can kick a rock over there. Oh, get it out. Say what you need to say. And so that went on for about 5 or 10 minutes and then he hugged me and said he was so sorry. Got back in the car and off we went. So, I definitely think that space, giving them their space is important for the aggressive meltdowns.
Another thing is visual schedules. I found out very quickly that a lot of his anxiety is he wants to know what's happening next. So, I try to make picture calendars or picture schedules so he knows exactly what we're doing each day.
[00:27:58] Carole: Has these experiences with your kids and even you, Lizzie, with you and your brother, has it made you more, have more faith?
[00:28:06] Lizzie: Oh, definitely. Yeah, especially with Matthew. I would say Matthew's more of a constant reminder to have faith. Because we do go through such low points with him, but I think God really works through him and where he just brings out the joyful moments that we're all just so thankful for and reminds us that he is a blessing in our lives as hard as it can be sometimes. But yeah, I would say that it has definitely made our family extremely faithful.
[00:28:36] Amy: Matthew is our biggest joy and our heaviest cross, simultaneously.
[00:28:46] Carole: You'll want to tune in for the next episode of Wisdom Shared, where Lizzie shares with us what happened to her during the time of Covid.
[00:28:53] Amy: I told my husband, we've just got to get her to the hospital. She was in a room by herself and I was in there with her and I was praying because her temperature just kept going up and I just knew she is a sick girl. And as I was praying, something came into my mind. The words take her tampon out and I thought, am I imagining this? Like, why am I thinking of a tampon?
[00:29:18] Carole: Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts.
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