Transcript for Podcast Episode: 116
Autism Dad Advice | Interview with Dr. Charles Barbera
Hosted by: Dr. Mary Barbera

Mary: You're listening to the Turn Autism Around podcast episode number one hundred and sixteen, I'm your host, Dr. Mary Barbera. And I'm so excited to have my husband, Dr. Charles Barbera, on the show today to discuss his experiences with Lucas's autism, as well as to give some advice for dads of kids with signs of autism or with or without a diagnosis. So I'm also thrilled that my book, Turn Autism Around:An Action Guide for Parents of Young Children with Autism will be out March 30th. That's only one more week away. And so if you haven't gotten your copy preordered, I would do that right now at TurnAutismAround.com. So let's get to this great interview with my husband, Dr. Charles Barbera.

Mary: OK, so thanks for joining us.

Charles: Very exciting. Thank you, Mary, very nice to be here.

Mary: So Spencer has been on the podcast. He's episode number eighty-five. And so since then, we have wanted to get you on to talk about a father's journey, one specific father. But also I tell a lot of stories about Lucas's development and how you were the first one to mention the possibility of autism in Lucas. And so I thought our listeners, both parents and professionals, would like to hear a little bit from you actually there. I did do a podcast, listener survey back in the fall and a couple of different people suggested that I have you on. So by popular demand.

Charles: Thank you. Yeah, very exciting. Very exciting. So do have any questions or no?

Mary: Yes, I have some questions, OK. All right. So I always start with describe your fall into the autism world. And when did you first, if you can remember, when did you first start having concerns about Lucas?

Charles: I think it was when I thought maybe he was deaf and I forget when that was, but he would stop responding or looking or and then so I don't know I don't remember how old he was, but I think I'm going to mention it to you. And then, well, I said something and then you were like, no, even you don't want to hear that. And then you.

Mary: Yeah. Then well, I think when I was, when I had Spencer, Lucas was just about 18 months of age. And I tell the story how when Lucas was 21 months of age, I had we had an appointment for Spencer's well check at two months. And you had to ask me to ask the doctor how many words Lucas should have at that point. And when I asked the doctor and when I came home with Spencer, you were like, how was the visit? I said, fine. Spencer did fine. And then you said, how many words should Lucas have? And he was twenty-one months of age. And I said he should have twenty-five words. And you said, well he doesn't have twenty-five words.

Mary: And on the way home I was literally counting e i o as five words and grasping at straws. And so at that point I'm like oh yeah he has twenty five words and you're like, do you think he might have autism. And that's when I freaked. But you don't remember that.

Charles: You freaked? Which time?

Mary: Well, I told you on that day that I never, ever wanted to hear the word autism again, right?

Charles: Yeah, yeah, I read that book.

Mary: Do you not remember these?

Charles: No, I remember.

Mary: Do you remember, like?

Charles: Well, yeah. Then what was I going to do. So you didn't I mean, you never we never wanted to buy a convertible. We never wanted to go to a place. There are a lot of never that have turned out to be true. So you kind of get used to that.

Mary: OK, so when I said I never want to hear the word, I mean, you didn't know for sure how it was going to.

Charles: I didn't know what autism was. You could be on. Right. And I was the autism that I know. Now, Mary Alice is not the autism that I was describing at him at 18 or 20 months. It was the rain man guy. Right. Like the guy that doesn't talk or interact or only, so I use that term a term of somebody 30 years ago, twenty-five years ago, whatever it was that really didn't know what the term was. But I knew there was something that wasn't right.

Mary: Right. And because you're a physician, did you have any medical training on autism?I think one of the things that you told me that it's actually in my new book is that, like, you were worried because Lucas did not respond to my pregnancy and to having a baby around, like we could have literally brought a baby plastic doll home.

Charles: Yeah, that was all part of the fact that his ability to see other living things just wasn't there. And I guess it started with even pets, cats, dogs, like never anything that just got excited about grandparents know other kids, nothing. So when Spencer came home again, he was only a year and a half. So how would you know? But you would expect somebody to be like either really happy or really angry, like, what is this that I have to deal with or, oh, my God, this is great. And he was indifferent. Yeah. And after a certain amount of time of trying to force him to kind of pretend, and then it was the Mary Kate and Maggie, I mean, there are other things too right like that you just couldn't get him engaged with. We knew something was wrong. And I think even before we went to see Dr. Copeland, we knew on the way there what it was.

Mary: Oh, well. But that was more than a year, a year later. Yeah. So I went into a very deep state of denial and for over a year and, you know, and this is the late nineteen nineties, the Internet was just coming to be a thing. And but there are still parents out there who have spouses that are in denial or grandparents or whatever. So what advice do you have, if any, to deal with somebody in denial, like, you know, even as a physician you've worked with other families. And if there is something developmentally off track, do you have any advice for getting someone out of denial? I know I did a video blog we can link in the show notes, but do you have any advice?

Charles: Well, I think the thing is that you can't force someone to believe something they're not going to believe. All you can do is demonstrate your point. And it can't be done in a week. It takes time. And so you plant a seed and you fertilize it and you water it and eventually it takes root, maybe not the first time, maybe the second or third time, but eventually, you know, things become evident when it blossoms. And what it is, it is.

Charles: So I think my advice to your question would be if your if your spouse is in denial, I'm not sure the right thing to do is to say you're wrong. And I don't think I ever said that right. You're wrong. Even if you think you're wrong, you just think, well, my point is my point. And I'm going to go on and just watch these things and observe because we're all wrong. And the best thing that could have happened maybe is I would have been wrong. Right. And then whatever, you'd be interviewing, I'd be interviewing you, whatever, but we were. But so as things went on, it's obvious. But, you know, when little things happen and again, you said, I think something to the effect of I don't want to hear that word again or something like that. And so when you go on and you kind of try to point things out, you don't use that word. You use another word.

Charles: Right. And we know. Oh, yeah, this is this normal or. Oh, you know, Mary Kate is doing this by now, Lucas isn't or those kinds of things, to bring out your point without saying clearly, there's no advantage to being right in this situation. And there and really just Lucas by himself was the one that demonstrated what he had. And what he had wasn't the autism that I thought he had when I mentioned that word.

Mary: And the thing that got me out of denial that I put in my video blog, which was actually one of my very first video blogs, is that learning that it didn't matter if it was autism or speech delay or anything, nothing. That the key was that we needed to figure out what to do to help him catch up his delays. And so then the denial, which is the whole point of my new book tour of autism around, is it doesn't matter if it's just a speech or if the child's going to go on to be gifted or the child's going to go on to have severe autism. The key is, is that and that's what got me out of denial, learning that actually kids could make a really big improvement with behavioral treatment, with treatment.

Charles: Sure. I mean, I think, though, that and again, it's like any disease, you treat the symptoms. I mean, if you can find the cause and treat it, then there is a treatment for the cause. That's great. But really treating the symptoms. So, oh, it's only a speech delay. OK, if we can agree that it's a speech delay that eio or not five words. Right. And that there is a speech delay, then speech therapy is right. Whether or not and it's not going to harm anyone, even a typical child to get speech therapy, that's not going to happen. Right. So identifying if someone is in denial, identifying something that you agree upon and say, OK, well, let's call it whatever we can call it X, and what about what are the things we can do to improve this? Well, he's not he's not using words. OK, well, let's help use words. And I think we checked hearing out because we thought maybe that was a response to he couldn't he couldn't hear and we did all this vision. I think we even had to check those kinds of things.

Mary: So do you think did you go through stages of grief when you did when we did find out that Lucas had autism, where do you remember any stages of grief you went through or how you were feeling back then?

Charles: No, no, I don't think so. I mean, I'm not saying I didn't. I said I don't remember. I don't remember. It was a while ago.

Mary: And it's a long process because till...

Charles: But eventually, you know, having them my first child, it was what I knew. So there was no there was no sense of disappointment, certainly not in him. And you couldn't certainly ever let him think that you were disappointed in him for something, no matter what it was, any of our kids, either of our kids. But certainly Lucas for something beyond his control. And it was just trying to do the best we could. I don't think you know, I think there were times when you look and say, well, maybe there won't be the college graduation or maybe that won't be the driving or whatever. And I think those things certainly happened. You know, especially maybe the grief was in a form of watching him with another kid and a play date where he was just not reacting, especially when there was more than one kid his age, or then eventually when his brother began to kind of exceed him and reach milestones ahead of him and then kind of looking and thinking. But, you know, when you feel sorry for yourself, you don't help your kid at all. So it wasn't anything. And hopefully we move through that fairly quickly if that happened at all.

Mary: I do tell the story of like on the way home from getting the diagnosis with Dr. Copeland and Dr. Copeland. Also, I did an interview with him for the podcast. We can link that in the show notes. But on the way home, I was in tears and you were saying things like, he'll never go to college, I'll never get married, you know, and all those things. And I was just like, stop it. Like, we can't. And I think you were overly pessimistic right away, even though there is hope. I mean, take a three-year-old I mean it was the day before he was three. Even if he looks like he has the most severe autism in the world, there's still hope that he's going to get a lot better. There is hope now. There was hope then, but and I was just clinging for anything. So I do think that you right away, just kind of in your mind, just I mean, you ended up being right.

Charles: You know, you're right. You're right. I think you're right. When you when you hear that you're in now that you bring that out, it was it was you go through it, like I said, that checklist of things that will never happen, that you always envision when you're in the delivery room. This is going to happen, you know, and I hope I live to see X, Y and Z and then I guess and looking back on, it's embarrassing because you'd you really want. Your child to be as happy and healthy as they could be and anything for you. Right. And so but as a new parent, I think I could I could kind of understand why you might react like that. And then after obviously twenty-five years of doing it, you look a little differently.

Mary: Yeah. And I think that car ride home while you were saying things and while I was still clinging for hope to turn it completely around, I think, like my whole world view kind of changed right away. Like I was just like, well, who's to say that Spencer, who's 18 months of age, isn't going to, God forbid, get into an accident or have something happen that you have no control over what the future is going to bring? So like that whole I want to live in the suburbs with the picket fence and have to two point five kids and have like all of that. I hope they go to college. I hope it's like that is just it's like you said, it's kind of embarrassing, but it's kind of like you have no control over.

Charles: Sure. I mean, it's awfully sobering. And I think that the whole the whole experience, though, has changed the course of certainly of your life, of all of our lives, including our other child who was where the priorities were, whatever they were, which I don't even remember what they were at that point. But they're not that now, obviously. And when you look, your fears are a little different. So we're not fearful necessarily, although we are sometimes of a car accident because he's in many people's cars with young drivers and whatnot. But the fears turn to what's his future, especially his future without us. And that, I think, is probably one of the bigger fears that you don't necessarily have with Spencer, who is the youngest, who will figure it out regardless of whatever you have to do. And Lucas would probably know would definitely be at the mercy of whomever were there to accept responsibility for him. And Lucas doesn't know, would never know if he was being abused or not, ever. And he just would have no idea of what that was, not right or wrong or whatever.

Mary: And he certainly wouldn't be able to request help to get out of any kind of situation. So that is I think our biggest fear is getting him set up for the future without us. But what advice would you give her dads of kids with autism? And does your advice change if one when they're little versus when they're older or if they're severely autistic versus on the milder end? Like, do you have any kind of?

Charles: Well, I think part of me, you know, we all we were certainly fortunate to have Lucas. I don't think there's a doubt in either of our minds that he's a joy and has changed our lives in certain ways. Lucas, although his disabilities are on I think on the more moderate to severe end is a little easier to accept than some of the children who may have moderate autism, who are just this shy of being typical and the things that that brings to them because of at this age socially, you know, there are a little but they're aware that they're not invited X, Y and Z and that they're not you know, they're not with the in crowd or maybe they can't drive or maybe they can't get a job or whatever. That is a little different and probably would break your heart more than someone like Lucas, who his worst thing is when we run out of pop tarts. I mean, that's what upsets him. Right. And if he doesn't get upset about I really get upset about that as long as you have something about something else.

Charles: But he certainly, you know, couldn't care less if he wasn't invited somewhere or would have no clue if someone's making fun of them or abusing him, except physically, obviously. But and the greatest thing was the kids didn't. They is a nice kid and he's an easy going kid and whatever. And people were very understanding of him and that and we were just lucky, very fortunate in the school district we're in that that we had that kind of support for him. So for parents, you know, the fathers, I would say one of the things that you probably. To accept is and this is an autistic child or a typical child is your child's going to be your child and not the child maybe that you were thinking in the delivery room that this child was going to be and and accepting that any little thing in a typical or atypical child is something to be proud of and to cherish. And so they are different for different people. So you taught Lucas to ride a bike, something I never, ever thought would happen. And that was a huge accomplishment. Now, everyone, every father likes when their kid writes about right. And that's a great thing. But that for somebody like Lucas, being able to shave and be potty trained and make his bed, those things are very big accomplishments and things to be as proud of. As you know, people are proud of their kids for athletics or academics and those kinds of things.

Mary: So is it hard for you or was it hard for you? As many wives out there are many mothers get very entrenched in the whole autism world. And like I drove in and then got overly focused on autism and a thing that you can even for other dads that might be listening, like if their wives get, like, completely obsessed with autism and how that changes the dynamics of the family.

Charles: Well, it's just patienceand find another hobby to or something, because I think that the term autism mom or whatever they call it, is just a maternal instinct that is driven and not something that it's not a bad thing. It's a good thing. And it sort of takes the heat off me because I couldn't be listening to podcast 24/7 or reading these books or whatever. And so it's sharing that responsibility, if you will, and then really accepting the fact that you could come in from work and, you know, and that you would have something else to do that has to do with autism. And that that that is just kind of how we evolved. And so it happens. You're obviously there's a wide range of people who spend a lot of time invested into their kids' futures and understanding. One of the things that maybe I would say to parents are that every fad down the line doesn't need to be tried. But we have and at some point, you know, you've kind of maybe got to look at it and I don't know. So there have been there's probably not an easy pill to swallow to cure autism. And that pill has been called, you know, of many different things in our family.

Charles: Unfortunately, convinced ourselves many times that the pill was working and Mary is very good record keeper and counts the number of knuckle bites and bones and ticks and kind of whatever that she could demonstrate. Actually, now in the scientific method, his behavior has not been changed because we took this out of the diet or we added this medication to the nightly regimen or whatever. Some have worked. Some have worked with aggressiveness. Some I work with headaches. I mean, some have been very, very good. And so, I mean, they're part of me that says, well, yeah, maybe you try anything that it works. But, you know, my guess is a lot of people don't have the luxury of time to do this. And I mean, you never well, actually, it's it takes a resource. Plus you do most people do have other children that that you need to make sure that no one has the only child syndrome because one child has autism.

Mary: And I think that is. Not a struggle, but like in a marriage, in a two-parent home, where you have to really be on the same page about what interventions you're going to try, how are you going to tell if it's working or not? What you know, not even bad interventions, just therapies and what kind of co-pays you might have and what kind of all of that stuff. And it can get very.

Charles: And the one thing I mean, obviously, it can get all encompassing both, you know, your time, your money, your energy. One of the things that I noticed, though, is I believe my mother brought up the word autism once, which upset you. And I only bring this up because sometimes the people that notice aren't the people in your home, that somebody is either not improving or improving. So when Lucas, Mary start working with Lucas, he made leaps and bounds in improvements and I wouldn't necessarily know it, but the people that came to visit noticed it almost immediately. Oh, my God, I can't believe Lucas. Look what he's doing. He's doing a puzzle. He's interactive. He said hello to me. He got up and did this. He did this and those kinds of things where the parents may not realize what progress is because it's you see it every day and it seems to be slow. People that come into the house on a less frequent basis seem to appreciate those things.

Mary: Yeah. And I think it is a lot of it's confusing to measure progress. And which is the fourth step of the autism around approach is to take easy data that you can kind of tell if things are working or not. So let's move into my books, my verbal behavior approach book and my new book, Turn Autism Around: An Action Guide for Parents of Young Children with Early Signs of Autism, which is coming out in actually two weeks. We will have next week.

Mary: Actually it's coming out one week from when this is going to air, so next week the book is going to come out and Dr Temple Grandin is going to be on the podcast that day. And Dr Temple Grandin wrote the foreword for the book. So you had the pleasure. And many people don't know listening. They know you're a physician, but you actually majored undergrad in communications and English, so you are quite the good proofreader. So you read both my books, but you more recently read the Turn Autism Around approach and anything you want to say to the parents and professionals listening who may have pre ordered the book and are waiting for it to drop or yet to preorder at an autism around dotcom?

Charles: I am, I mean, again, I'm not here to sell books. That's not the reason for my being. So, you know, the one thing that I would say is the book is very simple to understand, and it's written for a level of adaption or use for mostly anyone, especially a younger, newer parent. And that's something I think that you don't see often in books like this about this topic, because it's a very complicated and complex syndrome, if you will. But the steps that you've broken down to dissect it and treat one of a dozen things and how to go about doing it is broken down into steps that is very manageable. And I think that's what this book is going to bring, that there aren't a lot of other things out there for tools for parents. And the other thing is, having read the book, it's not just for parents of people with autism.

Charles: So although you say Turn Autism Around, out of the 10 behaviors that you focus on, you know, six of them are behaviors that kids have that don't have the diagnosis of autism and they're typical kids. And the strategies work just as well.

Mary: Yeah, yeah. And it really can be used for all parents and chapters on talking and tantrums and sleep, eating, potty training. It's the book I needed when you first mentioned the possibility of autism, and I hope it reaches the millions of people that need it. OK, so I think it's great interviewing you and getting your thoughts. So I like to wrap it up with part of my podcast goals isn't just to talk about helping the kids, but part of my goals are for parents and professionals out there to be less stressed and lead happier lives. So do you have any stress reducing strategies or things that you do to live a happier life?

Charles: Hmm.

Mary: I can list some if you can't.

Charles: I try to go to the gym every day. I try to run. I try to stay as healthy as I can. I read all the time.

Mary: He reads fiction. I don't. I read nonfiction.

Charles: I guess I work a lot. Well, then what else?

Mary: You'd like to go to the beach?

Charles: I go to the beach. Yeah.

Mary: Yeah. But I would say you are an avid exerciser. And I think you one of the reasons main reasons you exercise is because it does reduce your stress. And so yes, reading and exercise.

Charles: I would say this stress doesn't come from I mean, the stress is in my genes, doesn't come from the fact that I have a son with a disability, though. I mean, I don't know that that's.

Mary: You don't think that makes you more stressed?

Charles: No. You know, at one point, maybe, but in many ways, he's much easier to handle than my other son. So and that's not because my other son's a problem. It's just that it's much simpler to handle Lucas than it is to to navigate some other things. So. Yeah, well, that's good.

Mary: Well, we you can tell from our thoughts here is that Lucas is a complete joy. And we have certainly both progressed individually, as a married couple because of his impact on our life has been huge. And his impact on my work and getting the work out to the world has certainly been a great thing. So thank you very much. I think this podcast interview will help a lot of people, and I'm glad that you took the time out of your day.

Charles: Well, thank you for having me. Thank you.