Joey Wahler (Host): It's something very common that many parents aren't that familiar with until it affects their child. So we're discussing autism awareness. Our guest, and she's a special guest today, Amanda Myers, a Registered Nurse with Memorial Health System, whose son, Charlie, who is 10 years old is autistic. This is Memorial Health Radio with Memorial Health System, Ohio.

Thanks so much for joining us. I'm Joey Wahler. Hi there, Amanda. Welcome.

Amanda Myers, RN: Thank you. Thank you so much for having me. 

Host: Oh, it's great to have you with us because you provide such a unique perspective on this. First, before we get into it, what exactly is autism for those that hear about it, don't really know for sure, and just how common is it in the U.S., as we alluded to? It's very common, isn't it?

Amanda Myers, RN: Absolutely. According to Autism Speaks one in 36 children have autism. Autism is a neurological disorder that makes communication and interactions difficult for children.

Host: Now this subject, as we mentioned, is near and dear to you to say the least. So when and how was your son Charlie first diagnosed?

Amanda Myers, RN: So my son Charlie, was diagnosed around age two. He just started doing certain traits and his communication kind of came to a halt. So we went to Merrit Memorial and our pediatrician aligned us with Children's Hospital and allowed us to get on the waiting list for him to be diagnosed. For him to be diagnosed as well as many other children, it does take months to get on when you're on the waiting list. And once you're there, you do two, 3-hour sessions to get your child diagnosed. But once you get the diagnosis of autism, it's almost like your key to help you with occupational therapy, physical therapy, speech therapy, and feeding therapy.

And those are all things that we did for our son, Charlie, to help him, and they were wonderful. We actually became like family with a lot of our therapists. We still speak to them this day.

Host: It's great to hear. So obviously the wait was well worth it. What are some signs or symptoms that could mean a child has autism and how early in a child's life can they actually become visible for the first time?

Amanda Myers, RN: I believe that would differ from case to case. For us, we noticed when my son was about 18 months to almost two, he just kind of started turning his toys over and lining everything up. He was pretty vocal prior to, and then it was just like one day all the words he could say like Mom and Dad, were gone and it was heartbreaking.

So we wanted to get him as much help as we could. It was very hard as a parent, it was mentally exhausting trying to figure out what are we going to do to help my son? Because for myself, even being a nurse, I didn't know that much about autism. So it's so important for everyone to educate themselves and become aware that it's okay if you're having a speech delay or something's going on, but there's help out there. You just need to find the right channels to get there.

Host: You taught me something there that I wasn't aware of. You say Charlie had started to speak, but then that went away. I would imagine there are many people like myself that don't know that can be part of this process, right?

Amanda Myers, RN: Absolutely. The austism spectrum is a very wide spectrum. There are children who are completely nonverbal, children who do say some words, but maybe it doesn't come out in appropriate context. And then there are children who are verbal. My son is considered verbal. So when he was two, he had an arrangement of words that he would say.

He would say mom and dad. And the one that got us was, I was always adamant on working with colors and numbers and that sort of thing, but he would try to say the word purple. It would come out a little different, but it was almost purple and it just stopped one day. And as a parent, I can't tell you how shattering it is to go from hearing your little one, say mom or mommy, to not being able to get the word out.

Some parents and some individuals don't see it till around three or four. And some children, because of lack of education in our area, aren't aware what autism is. So sometimes we just think like oh they'll grow out of this. But sometimes kiddos just need help.

Host: No question about it, and hopefully this conversation will help make people aware of that. You mentioned, Amanda, that there are different levels, different types of autism, so basically speaking, what are those?

Amanda Myers, RN: They have changed how we characterize autism. It's based on how much of a need the child has, is how they do it now. When my son was diagnosed, because he was been diagnosed eight years ago and things changed rapidly, it was levels of high functioning, moderate or low functioning at the time.

And at the time he fluctuated between low and moderate. And thankfully with us working with him and therapy, he would be considered high functioning now, but in the standards of the today of how much need he requires, he does still does require need, as do many.

Host: So Amanda, obviously for your husband and yourself, this was a huge adjustment to say the least, both in helping Charlie and dealing with this yourself. So what advice do you have for parents about how you felt and how you handled that early on?

Amanda Myers, RN: Absolutely. As I said before, I had never really experienced or encountered someone with autism, or I didn't know I did at the time. And my husband was the same. I was also pregnant with my daughter at the time we were going through this. So as a mom and a pregnant mom, I was very emotional.

And if I could go back and tell myself something, I would say give yourself more grace because it is stressful. You're worrying and your fretting of the future, and what about now and how are we going to overcome this? And you just want to give your children the stars, rainbows, and the moons. And that being said, like you want them to be the best version of them that they can be.

So my advice for someone would be to give yourself grace and know that you're going to be okay. You're still going to love your kiddo. Whether they get diagnosed with autism or they get diagnosed with a speech delay or any other diagnosis, you're going to love them the way you did before the diagnosis. They just may need extra help along the way. That would be my advice.

Host: Sounds like great advice indeed. So, speaking of which, Amanda, why is it important to talk to kids about autism and how can parents like you help to teach them about it? What do they need to know?

Amanda Myers, RN: I think that knowledge is power. The more we can empower our young youth and start young, like when your kiddos are toddlers, you don't even have to say, Hey, they have autism. It doesn't have be that kind of conversation. You can just word it when they're really little and wait till they're more ready for a verbal conversation about it as far as yes, they may do things differently like you, some characteristics may be, and they vary from time, but for us it could be pacing back and forth, repeating phrases over and over. But you can still be their friend and you can still be kind. But it all starts at home and goes into your schools.

And we just need to be kind to everyone and treat everyone like we all want to be treated. Everyone just wants to be a friend and play. Just because someone plays differently than you doesn't mean that you can't try to play with them.

And how parents can help with that, are there are resources out there. There are lots of books. For myself, I got to a point where if I could tell someone, how can we interact with our kids and tell our kids how to interact? We need to let our kids let us know what their questions are. So I actually, last year, wrote a book called The Brain of the Legend. And it asks questions to our readers about how can you help and lets the children derive the conversation.

And that way lets the parents or whoever's reading the book know like oh these are the concerns they have, or this is what maybe startles them or makes them worry about the interaction. If we can conquer and move past those, the more friendships that are going to transpire out of everything and nothing melts my heart more when I see a kiddo try to interact with my son, even if my son's not very receptive to it at the time.

But the next time, he may be all about wanting to play with them. There's nothing that'll melt a parent's heart more than seeing their kids happy.

Host: No question about that. And in terms of the book, you've been able to go and share that with children in classrooms, right?

Amanda Myers, RN: Yes, I have had the privilege of going in several public schools, reading the book and letting them ask questions, and I will tell you, I thought I would be prepared for some of the questions that they would ask, and I was so humbled and it was nothing but love and grace. It was amazing, and some of their responses brought me to tears because they generally just want to learn and love and just be a friend, but you just have to guide them and tell them that it's okay to want to be somebody's friend. That's okay.

Host: So in terms of communicating your message, the message of other parents in your shoes, so to speak, what's a common misconception regarding children with autism that you find yourself needing to clear up? 

Amanda Myers, RN: One of the biggest misconceptions that I've come across is that everyone puts everyone with autism diagnosis in a box, that they're all the same. Yes, there may be similar textbook similarities, like some of their stemming may be similar or bland foods may be similar, but just like every other child out there, every kid with autism has their own likes and interests and dislikes. They just want to be themselves just like everyone else. So the more we can be accepting of their differences, the more we can just be friends and play.

Sounds good to me. Sounds great to me, as a matter of fact. So has public awareness of autism, Amanda improved in recent years? And if so, how so?

When we were going through our autism journey, and I say early on when we were going through our diagnosis, I, myself didn't really know anyone at the time who had or at least had verbalized that they had autism. So as a parent, I felt alone. I had my husband who he and I, I just want to say, I would be lost today with that for it not be for my husband.

Amanda Myers, RN: Because we pretty much made a pact that we were going through this journey together. And every decision, whether it be medically or anything with my son, we do it together. And that's been a huge factor in my son's achievements and growth. But as far as when we first started, it was scary because we didn't really know anyone.

We didn't know where to go. And I feel like no one really talked about autism. A year ago when I announced that I came out with a children's book, our community in particular was over, it was overwhelming with joy of acceptance and like they just wanted to read it to their children, which makes my heart so happy.

Because the more we can just normalize the word autism, the more it can be, oh, they have autism, let's go play. That does not, that doesn't mean I can't play with them, or it makes them like an alien. So the now versus when we started, it's huge, huge improvements. It's amazing to be honest with you, and I've been humbled by it more than once and I thank God for that.

Host: So your 7-year-old daughter, as we continue this family affair conversation, which is great. She gave you some advice through a little show and tell, if you will, for this interview, when you were feeling a little bit nervous beforehand, right?

Amanda Myers, RN: Absolutely. I was very nervous for this interview because this is me stepping outta my comfort zone. I'm more of a like a behind the scenes cheer everybody on, but I'm not usually an upfront person. So that being said, I we are very upfront with my daughter. She is so supportive and a huge role model for other children about autism and how to interact with autism.

And that being said, I was just telling her I have a meeting today and I'm really scared, and I'm really nervous. When I personally get nervous, I talk fast. So my daughter, she drew a picture of a turtle to remind me to be strong and to speak slow so people can get our message because she too wants people just to love and embrace her brother and others with special needs in general.

I added the serenity prayer to it because it's my favorite and it gives me strength. So my daughter, she's a huge role model, at seven. She's three years younger than my son and she is beyond her years in accepting and wanting a change in autism and kids with special needs in general.

Host: How about in summary here, Amanda, what are your hopes for society regarding this embracing of autism that you'd like to see in the coming years? If we could turn the clock ahead 10 years from now, and Charlie's about 20 or so, what's the main difference you'd like to see in terms of this subject between now and then?

Amanda Myers, RN: That is probably one of my favorite questions and I would hope that years down the road that children that we have taught now to be kind and accepting and just want to be a friend, grow up to be kind adults and that we can just embrace each other for who we are and how we can all help each other. Because it's a better world when we all can just work together.

As a mom, my biggest goal is that we come to a day when people stop viewing people like my son and children like my son, as broken, but rather they're perfectly made just the way that God made all of us and we all have to work together.

Host: Words to live by for sure. And it sounds like Charlie's got a great support system to say the very least with you and your family. Folks we trust you're now more familiar with autism. Amanda Myers, such a pleasure to meet you and get a chance to learn and find out more about this very important topic. Thanks so much again, and the best of luck to you and your family in the future.

Amanda Myers, RN: Thank you so much for having me. This means the world to me that you guys are helping us spread autism awareness.

Host: It's our pleasure. And for more information as well as to get connected with a provider, please visit mhsystem.org/media/community-healthline-magazine/winter-2024/cultivating-kindness. Please remember to subscribe, rate, review, this podcast and all the other Memorial Health System podcasts as well.

If you found this one helpful, please do share it on your social media. And aA;nd thanks again for being a part of Memorial Health Radio with Memorial Health System, Ohio.