Autism #160

Alice Chaplick:

If it's something that is very close and dear to your heart and you want to see a change, you will find people that will help you. And as long as you fight for something you believe in, you will get it done and there will be people along your road that will help you.

Dr. Matthew Siegel:

This is going to be a place where one of our goals is for families really to feel at home and to feel like these people get it. And that vision of providing a home for people and families who are already dealing with some very challenging situations is, I think, part of what we're really excited about.

Dr. Lisa Belisle:

This is Dr. Lisa Belisle and you are listening to the Dr. Lisa Radio Hour and podcast show number 160, Autism, airing for the first time on Sunday, October 5th, 2014. Autism impacts all of us. Children and adults who have a diagnosis on the autism spectrum are attending school, working and playing with us in less severe cases. We may not even recognize that this is so and may not know the struggles that individuals with these disorders and their families are facing. Today we speak with Alice Chaplik and Dr. Matthew Siegel, a psychiatrist at Spring Harbor Hospital, about their experiences with autism so that we may better understand this important issue. Thank you for joining us. Listeners of the show are familiar with Marcy Booth, who has been on multiple

Dr. Lisa Belisle:

times and is a sponsor of our show. We love Marcy. We love the words of wisdom she

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has to offer and she she works with a great team including Alice Chapluck. Alice Chapluck works at Booth Main with Marcy. She has a BA in Psychology and elementary Education and Ms. In Education. She has three children and five years ago her youngest, Aiden, was diagnosed with autism when he was 18 months old. Since then, Alice has been proactive in early intervention programs and treatments and has seen positive improvements in his health and well being. So we started with saying we know you through Marcy but you are your own person and you have a great

Dr. Lisa Belisle:

story, a very compelling story that we said.

Dr. Lisa Belisle:

We've just got to bring Alice in

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and hear about this because we think

Dr. Lisa Belisle:

it'll be important for other people. Thanks for coming in.

Alice Chaplick:

Thank you. And when I was approached by Marcy if I would be willing to share my story, my first thought was deep breath. And kind of took me back to where I started. And when I thought about it, I decided if I can tell my story, even going back to lots of tears and emotions, if I could help one person out there, that would make it worthwhile for me to go back and to retell my story and the success of where I am or where the success of Aiden is today, why I'm here.

Dr. Lisa Belisle:

We hear this a lot, that people

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will come in and they'll say, well,

Dr. Lisa Belisle:

I'm not really used to being on

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the radio and I'm not really sure how well I'm going to do.

Dr. Lisa Belisle:

And then when we actually get someone

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in and we hear what they've been

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through in their life, that's really the thing. It's what they've been through.

Dr. Lisa Belisle:

So, Alice, let's talk about Aidan. Aidan is six and a half.

Dr. Lisa Belisle:

He's the youngest of your three children. You have two older children.

Dr. Lisa Belisle:

How old are your kids now?

Alice Chaplick:

My oldest son Daniel is 14 and my daughter Olivia is 11.

Dr. Lisa Belisle:

So you had successfully, I guess, ushered

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your older children through their early childhoods.

Dr. Lisa Belisle:

And then Aiden was born. You must have thought, gosh, I have

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a pretty good handle on this parenting thing.

Dr. Lisa Belisle:

I kind of know what I'm doing.

Dr. Lisa Belisle:

And then things kind of shifted for you and you realized, oh, this is

Dr. Lisa Belisle:

a really different situation.

Alice Chaplick:

Exactly. And I thought by the third child it was a shoo in of there really wasn't much to worry about. But when Aiden went to his, well, visit at 15 months with the pediatrician that I had for the two other children as well, they ask you, you know, typical questions of his, you know, social growth. And one of the questions they asked was, did he have the five word vocabulary that kids typically have at that age? And I actually stopped for a moment and I thought about it and I said, well, he doesn't have five words. And the nurse in the office said, are you sure he doesn't have five words? He must say ball, cat. And I said, well, he really doesn't. And she. So I said, well, what? What do I do? What? And she said, oh, don't worry, he's a third child. He's a boy. It will be fine. So I sat there and I thought for a second, and I said to her, I said, well, what happens if he's not fine? What happens if I come in the next appointment? He still doesn't have the, you know, he hasn't acquired five words. And she said, well, you know, we'll look into it. Maybe, you know, there's a delay of speech. She said, but I wouldn't really think it's a big deal. And the type of person I am in my personality, more of let's, you know, take the bull by the horns and get it fixed and get it corrected. And I said, well, let's say that I come back and he doesn't have the vocabulary. What would you tell me to do? So we have a couple different options. She's like, you can do something, you know, private through, you know, getting him tested. She said, or you can go through Child Development Services, which is through the state. It tends to happen quicker versus private. And I said, well, how do I go about that? And she said, well, we would give, you know, the phone number. You would call them. She said, it takes a while, you know, to get in. It's not a quick. It doesn't happen quickly. So I said, could I have the number, please? And she said, sure. They gave me the number to Child Development Services, and I finished the rest of his appointment and. And I drove home and thought about what would my next step be. I decided as I entered my house to pick up the phone and call Child Development Services and tell him what happened at my appointment. And I would like to have my son screened. The woman said, well, you're lucky. She's like, usually it takes about six weeks to get in, but we have cancellations, so you can come. It was 10 days out, so I said, okay, thank you. At this time, I was thinking in my head that my son probably had a speech delay. Having my background in education. I figured he'll get some speech classes and he'll be on his way. The time came when he had his appointment with Child Development Services. And Aiden and I drove to the appointment, thinking it would be just a regular appointment. And I entered the building. To this day, I will never forget what the building looks like, smells like, because of what they told me that day at the appointment, Aiden was. At this point, he was probably 17 months old. There was a team of therapists in the room, from a speech therapist, an occupational therapist, a developmental therapist, and, and I believe, a physical therapist. And Aiden was sitting in my lap, and they all spoke to me and to Aiden. And each therapist did their own workup, whether it be speech. But one therapist said to me, I'm going to take Aiden to see if he can do the stairs and he'll be back in a moment. So she took him from my arms and she left the room. About five minutes later, she came back into the room and she handed me back to him and she said, okay, pretty much set. She's like, he has no detachment issues. And I looked at her somewhat confused, and she said, here it is. I took him from your arms. He didn't cry. I wanted to see if he was able to crawl the stairs or walk the stairs. He did, and now he's returned to you. And she had a very cold personality. And after I had Aiden back on my lap and the other therapist had worked with him, she said to me, okay, we have decided that he is on the autism spectrum. And one can only imagine when you feel that you're going to an appointment because your son may have a speech delay for this individual to say, well, your son's on the autism spectrum. I was not prepared by any means of what she was about to tell me. At that point. I had heard enough. I said, thank you. I appreciate everyone's time. I took my son and I left. I got in the car. I, of course, fell apart and had no idea what I was going to do next. I drove home. At the time my two other children were home, my husband was traveling for six weeks to train for a new job. So I truly felt like I was alone at this. I went home. I told myself that I would not ask myself why this happened, but I would try to figure it out for Aiden and I would try to give him the same quality of life that my other two children had. And I looked into at that point, I had to see what options were there for therapy. And through child development services and his diagnosis, he qualified for at home therapy. A developmental therapist, a speech therapist, and an occupational therapist would come into my home on a weekly basis for two to three hours per day. So I set that up and I had people come into my house and how they worked it is. They did not want Aiden to have one developmental therapist. They thought it would be better for him to get used to different people. I didn't agree because I didn't know how I would feel these, at the time, strangers coming into my house on a daily basis, working with my son and telling me what would be the best for my son when I was his mother. But after time, I honestly realized that they were There for the best for Aiden. So we became like family. They became part of, you know, my life, of my own life, my husband's, my two other children, they're welcomed into our house. They further came to birthday parties for Aiden and they became very instrumental in his life. And after him receiving services at home for about. He started at 18 months, at about two years, two and a half years. I realized when my older children were at home for long periods, whether it be a school vacation or summer vacation, I realized the impact that kids had on Aiden's progress versus adults. And at that point I started looking into preschools that Aiden could attend so he would be with peers his own age. That process was quite. It was an undertaking. I scoured every preschool in the area and very discouraged at what was out there or what I felt was out there for my son. Some too clinical that I felt that I would feel comfortable being able to drop my son at two and a half years old. Off off to. So my last preschool that I visited was the one that was closest to my where we lived. And I walked in there with true. I was at this point I was desperate that was I going to find out a place that I could honestly bring Aiden to. I walked into this door, just the environment of the school. I knew my son's going here, I want him to be in attendance here. What do I need to do? It was even prior to meeting the director or the owner or the staff. It was just a feeling that overtook me when I walked in this door. And then at that point I met with Ruth, who is the owner, director of Shooting Stars and the team of teachers that they would have for Aiden. And when I approached the state because it's state funded, so the state has to actually okay it all, they told me that I could not pick or choose the school that my child would attend. They could only guarantee me an appropriate placement for him and his diagnosis. And I said, well, I have to be able to get him here and I have other children that I have to get to school. That finding a school so close to where I live I thought was positive and you know, it could work out. And they were not very helpful with the fact that I needed it to work out for our entire family. At that point is when I realized through the state that, that we were just a number amongst many. And that is where Ruth came in, the owner, the director of Shooting Stars and she said, we will make this work. We'll figure it out. We will get him in here.

Dr. Lisa Belisle:

Here on the Dr. Lisa Radio Hour and podcast. We've long recognized the link between health and wealth. Here to speak more on the topic is Tom shepherd of Shepherd Financial

[Unidentified voice]:

the most important thing you need to begin a personal evolution is heart. To start your journey, you have to take the first step with your eyes and your heart wide open, open to new experiences and possibilities. Without this openness, your efforts, your path toward growth and positive change will be fraught with obstacles that seem insurmountable. So if you find yourself looking forward to good things to come, open your heart and take a brave step toward the future. If you're interested in evolving your relationship with your money, get in touch with us. I'm here to help. @tomappardfinancialmain.com we'll help you evolve with your money.

Dr. Lisa Belisle:

we are speaking with Alice Chapluck who is sharing her story and the story of her son Aiden who was diagnosed as being on the autism spectrum.

Alice Chaplick:

It had to be around February so he was just turning three and he got a spot shooting stars and he started out and it was another hurdle because he had to get used to a whole new environment being away from me. Mom was not present no longer at the therapy sessions and I had to entrust the people at the school, his team of therapists to take care of him and leave him in their hands. So it was another learning and a growing experience for me as a mom to let go of a child of three years old with problems and handing them over to people that you do not know. But they made me feel very comfortable and confident that he would be fine. We went through the whole dropping him off, him crying, holding onto my leg saying please mom. You know, actually he wasn't even saying please mom because at this age he was non verbal and in my mind I'm thinking he's saying please mom, don't leave me. So after a few weeks of him getting used to the schedule and seeing that the people were there to help him, he got used to it and he was Happy, which made it easier for me to leave him on a daily basis because. Because he went to school at 3, he was there five days a week from 9:15 to 1:15. And he at this point was non verbal. And Aiden used a system of communication called the PEC system, which was a picture exchange system. So if I can take you back to when Aiden was receiving home therapy and we were discussing about Aiden and how he was communicating or his lack of communication is where I felt behavior wise, he was falling apart because I would naturally give him a snack or a drink. If I gave my other two children a snack and drink, I'm going to give my third child a snack and drink without him having to ask at that time. I would give him a snack and a drink and he would look at me and he would start to cry and he would point to the cabinet of where the drinks were and I'd say, aiden, here's your drink. And he would fall apart. So I couldn't understand. I was thinking, well, he doesn't want to drink. But what I learned later learned is he did want to drink, but he wanted his drink in a blue cup. He didn't want his drink in the red cup. But without a form of communication, I didn't know what he was saying. So it was very frustrating for him, as it was for the other people in our family, but obviously more frustrating for him. So they instituted the program of pecs. And what they were able to do is give him a picture. And if he wanted the blue cup, he would have a picture of a cup that he would put. He would take from a Velcro folder, take the blue cup, put it on a Velcro strip, and then he could take the color blue and put it next to the cup. So when I went to get everybody a snack, I got him the blue cup, gave him, and he was happy. It was that easy. So in time he got used to that. And that was his form of communication in our house as they were working on speech with him. So when he gets to school, he continued with the PEC system and it was probably six months to nine months. And he actually was speaking and he was actually speaking in two to three word sentences. The speech therapist at the preschool were completely amazed at how well he learned the system and are amazed at the language they acquired in that amount of time. And I was of the personality where if they said to me at the end of his day at pickup, Aiden did this and this, we would like him to work on this, if you wouldn't mind working on this at home. That would be great. So I would go home and I would talk to my whole family and say, this is what Aiden did at school today. This is what they think would be beneficial for him. If we do it at home, we have carryover. It will be that much more of a success rate. My kids were on board. We did it. And soon Aiden was leaps and bounds at his progress in school because of not only the early intervention that I did not wait for the doctor to say, okay, it's now he's two and he has no language. Let's decide what we're going to do. And at 18 months, he started services because I, his mom decided that I want to know what's going on. So early intervention and the fact that I went with my mother's gut, that I toured the different schools and knew that they were all deemed appropriate by the state in terms of his diagnosis. But I went with my heart where I felt comfortable leaving my son. I said, in embracing the fact that his team of teachers were going to help him and give him the tools that he needed to progress further in his life, further in his diagnosis. So at this point, he is talking, we remove the pecs and things. We're starting to see that light at the end of the tunnel. And what I did in terms of Aiden and any information that they gave me from school, such as any kind of an electronic device that some people may say, oh, my child knows how to read because of an iPad. They told me it would be an advantage for me, a disadvantage for Aiden, if he was to get into any kind of an iPad or an electronic system. They told me basically to stay away from them. So I listened. I made sure he didn't have an iPad because I thought that would help him, you know, further, help him acquire more language or reading before they told me basically it would be happening. So I followed, like, a bible of what they told me to do with Aiden. So if we were out to dinner and. And we pulled out our phones and my older children wanted to play games on our phones, and I knew that that was not in the best interest of Aiden. So my other two children were not allowed to play with phones when we were out in public as a way to, like, while you're waiting for them to get you a table, I would not let my other two children do that. So in terms of that, with my other children, it was hard because they had to learn kind of. They had to mature quicker than kids probably their age, and they had to deal with things that kids at their age technically were not dealing with. But I knew it was all for the benefit of their brother. And they, too, now understand how important and instrumental it was in his. Where he is at this point. And what I want to tell people is it may be difficult and it may be sacrifices and. But it's not for a long period. He, you know, if we went out to dinner and Aiden fell apart, I would instruct the kids to say, okay, this is what we're gonna do. If it works out, we'll all be there. I said, but if Aiden, you know, has something happens, we all have to leave. Please don't ask mommy why. We get up and we leave, and we'll discuss it later. So, I mean, we try to do everything that a typically family does. Going out to dinner, going to parks, going to people's houses, going to church. We tried to maintain our normal family life, but there were times that we had to take a little break from things that we did until I felt comfortable that it was putting Aiden in the right environment. My family was very instrumental in the progress of where Aiden achieved. I went home right after my appointment and called my family and told my family of the news. And everyone's answer to me was, oh, Alice, no. You're looking into things because of your background. You're thinking things that aren't really true. He can't be. The other two kids are fine. He'll be fine. Don't look into it. Don't worry about. It was basically the answers that I got from most people, including friends. And. And I told them what I wanted from them is I would like for them to understand if they grabbed a book that the doctor gave me, a list of titles of books that would help people to read on autism. So I gave the information to my family and the type of family that I come from. Families first. And my parents right away went to the library, enrolled in a course. Any books I gave them, they went and they sought out those books, and they read those books. And they were like, we're here for you. When I went to visit, all hands were on deck. I said, this is how we have to do things. Nobody questioned it. They understood, and they were amazing. Without the family and friends support that we had, Aidan would not be where he is today as well. I had some people that I would say shied away from us because they were unsure of how to deal with it. And listening to, oh, they're coming over. They have a son that has autism. But I didn't get that with my friends, generally, they were like, don't worry about it, come on in, we'll figure it out. What will work for you? We'll make it work. And I have to honestly say, having that type of attitude, Aiden was able to pick up on that. And he was able to see people that treated him as a normal individual and he embraced that. But there were those people that looked at him and were unsure, kind of like, ooh, do I say hi to him? How do I say? They were so concerned with what they're dealing with that he ended up having had an attitude to them. He could see that they were shying away from him. So he then did not grow attached to them. I saw it happen in family members, I saw it happen in friends that I wasn't too concerned with at the time. But if you can look at a child and accept him for who he is, and he realizes that that gave Aiden that feeling. He embraced that feeling that he could be comfortable where he was. So now I want to bring you up to. He's in preschool five days a week. And the preschool is a special purpose preschool. It also has a typical preschool as well and how they work it. They have three classrooms, they have a blue stars, which is a typical preschool that anybody can go to. Then you have a green stars and the ratio is more of a three to one. And then you have orange stars and that's more of your severe diagnosis, your one on one. An Aiden started in the orange star classroom with a one on one. He was there for about a year and his progress was so amazing that they asked me if I would be interested in moving him to the green stars, which was lower. It was a higher ratio to student, but they felt that with the kids that had higher levels of functioning that Aiden would be able to take advantage of seeing kids with those skills and they would kind of transfer over to Aiden. So I said, absolutely. I said, if you think that would be beneficial for Aiden, I'm on board. Tell me what I need to do. Like everything else, you tell me what I need to do, I will do it. We moved him to the green stars. We again saw amazing progress in leaps and bounds. And to the teacher's astonishment that they couldn't believe where he came in such a short amount of time from a kid that started nonverbal in a one to one ratio that is now with kids, speaks, speaks in two to three word sentences and had no behavior issues because he was able to effectively communicate with people, peers and, you know, teachers. Not to say that he didn't fall apart. A typical kid falls apart if he doesn't like what he hears. And Aiden still exhibited those behaviors, but it wasn't related to his diagnosis. And in the Green Stars, he did an amazing job and he attended Shooting Stars for a total of two and a half years. So probably six months before his last year, they approached me again and they thought that Aiden would be able to have a few days in the Blue Star classroom. And I was taken aback because I knew Blue Star meant those were all typical kids. They didn't receive services. Nobody had speech, nobody had ot, nobody really had a diagnosis. They were where typical kids went to preschool, and they felt that would be beneficial to Aiden as well. So I said, okay. I said, but you know, I'm worried about him standing out in the classroom. And they said they would not move him or put him in a situation where that would happen. So I trusted them, as I did for the past year and a half with them, and I said, okay, I'm on board. Tell me what I need to do.

Dr. Lisa Belisle:

As a physician and small business owner,

Dr. Lisa Belisle:

I rely on Marcy Booth from Booth,

Dr. Lisa Belisle:

Maine to help me with my own business and to help me live my own life fully. Here are a few thoughts from Marcy

[Unidentified voice]:

when was the last time you took a break from what you were doing, from the work that was piled up on your desk and just looked up? I know that during the course of my days, I often forget to take a moment or two to just breathe, look up at the sky and dream. Terrible that I have to remind myself to breathe. But when I do, I feel energized. Because in those moments, I'm able to let go of the daily grind and think more about what I want to accomplish, how I want my business to grow. Sometimes those are the aha moments. If we all took a few moments out each day to stop what we are doing and dream a little about our business futures, not only would we feel a great sense of calm, but we may come to realize that these dreams can, in fact, come true. I'm Marcie Booth. Let's talk about the changes you need. Boothmaine.com

Dr. Lisa Belisle:

we are speaking with Alice Chaplik, who is sharing her story and the story of her son Aiden, who was diagnosed as being on the autism spectrum.

Alice Chaplick:

So Aiden now was in a typical preschool with. He also. He had push in. So his speech therapist would push in with him, not that she would sit right next to him, so that the other kids were like, well, who's that person sitting. Sitting next to Aidan? You know, she was around the room giving support when he needed it. And the teacher in the Blue Star room, as all the other teachers were phenomenal. And he stayed in Blue Stars. He had a couple bumps in the road. We pulled him back into Green Stars for a little time, but then he ended up back into Blue Stars. And he actually graduated and was registered for kindergarten like any other kid at his age. And I registered him for a typical mainstream class. He had services in place, actually more services than he actually needed. Just to make sure he was successful in the transition from preschool, being that it was a special purpose preschool, into a public school setting. He was able to be bused. He went to his kindergarten screening and he did amazing. He did everything that he needed to do to be able to be enrolled in kindergarten. And I have to honestly say I really had to sit back and think about where he began in true amazement that I was. I really gave up the thought when they told me that my son was diagnosed being on the autism spectrum, and specifically he was diagnosed as PDD nos, which is pervasive developmental disorder, not otherwise specified. I really gave up the dream that he would be, or he would have the ability to be a typical child like my other two children, where you take it for granted, oh, my kid's going to kindergarten. The first thing you think in your mind is, my kid's going to kindergarten, I'm going to have free time. I'll be, you know, I'll, my kids will be in school. And I looked at it as, wow. I would have never thought that in the years from 18 months when he was first diagnosed to now that he's 5, that he can go to kindergarten, a typical public school setting, and he can take the bus. I mean, that was a dream that I had for him. And at this point, he was fulfilling the dream that I thought wouldn't be, wouldn't happen for him. So him going to kindergarten versus my other two going to kindergarten was a whole different emotion. It was like having that first child off to kindergarten when you're sad and like, oh, no, I had my child here. Who's going to help him with his lunch? Who's going to help him, you know, tie his shoes? This was liberating for him. It was Giving him something that I thought he would never have. So he. When he graduated from Kent, from preschool. I'm sorry. He was so happy. He understood the busing because my other two children went on the bus and got picked up from home. He was familiar with that. I showed him the school ahead of time. The school was amazing in helping me transition him during the summer, what to do during the summer to make the transition to a new school, a new team of teachers, new peers, successful for him. And I can honestly say he's now entering first grade, so I can look back on his whole kindergarten year and say that his transition was seamless. And it's amazing. I can say that. But he got on that bus that first day of school. He loved the bus, taking it to school, taking it home. He loved school. He gave me no problems to go to school. I mean, he has your typical, oh, I don't want to go to school. Well, he would actually hear that from his brother and sister, really, because Aiden does love school, but he did amazing. And when I went to his first meeting in kindergarten and after he had started, they said we could pull back on some of his services, that he had way too many services in place, too many hours, and they felt that those hours would be better served inside the classroom. So he ended up, to this day, he gets an hour and a half total, a week of speech and social work. And social work in terms of just kind of helping him be proactive on unstructured situations in school like the cafeteria, the playground, you know, how to deal with kids, that maybe Aiden will say, oh, do you want to play with me on the playground? And they'll be like, no, I don't want to play with you. So just your typical situations that kids encounter when they're off to school. And he has an hour and a half, and now we're starting first grade with the same services. And the speech teacher tells me that he has better language than typical kids that are in the classroom of his age. Academically, Aiden doesn't have any support academically, and he has played T ball, he's played soccer. He goes to play dates with and without me. He loves to have his brother and sister's friends come over. And he is fantastic with them. He's got a warm heart, he's sensitive, he's very concrete, without a doubt. I mean, we can't give him too many abstract things, but he has done amazing. And what I tell anybody is that if you even think that there might be a slight chance of some kind of a learning difficulty. Instead of denying it or thinking that it will change on its own, seek help for your child. And if I had not sought help for Aiden, I know he would not be where he is today. But I have also been told by teams of experts that if it wasn't for the early intervention and the fact that I was willing to listen to what the school told me to do, Aiden absolutely would not be where he is. And it may seem by listening to my story, that it kind of worked. All it sounds very seamless, but I had a lot of bumps in the road. I had a lot of arguments with people in the State Department to say, no, your son can't go there. And I worked through it. The main autism society was very instrumental. I sought help from them, and they were an advocate for me. If it's something that is very close and dear to your heart and you want to see a change, you will find people that will help you. You have to be the advocate for your child. And as long as you fight for something you believe in, you will get it done. And there will be people along your road that will help you. You won't be alone. You know, you'll have support of family, you'll have supportive friends. You'll see the progress in your child and you'll know why you're doing what you're doing, and trust in people and trust in your heart. And you could have the success that I have had, that we have had with Aiden.

Dr. Lisa Belisle:

You've made my job very easy.

Dr. Lisa Belisle:

You have a very eloquent and heartfelt way of sharing your story and sharing Aidan's story. Before we came on the air, you said your older children were asking you, why are you going to be on a radio show to talk about Aidan?

Dr. Lisa Belisle:

He's so normal.

Dr. Lisa Belisle:

Like, what's to talk about? And you had to remind them of where we started.

Dr. Lisa Belisle:

So that's saying something.

Alice Chaplick:

Absolutely. And my son is 14, so this all roughly happened when he was about 10. And kids are kids, they believe what they want to believe. And he just didn't want to think that anybody would think different of his brother or treat his brother any different. And it's funny how things happen. Daniel and he was in school, and he was in the cafeteria, and there was a child that he went to school with that was on the autism spectrum. And he was aware of it, and he connected the points because of his brother. And this peer of his was being picked on in the cafeteria, and he went and he helped out his peer. And Daniel didn't come home and tell me this, but the teacher called me and said we wanted to let you know that something that was, you know, your son did that was amazing. And I look at that and say, that's what explains maybe mom telling him this is what you need to do for your brother. Hearing that from people is what, you know, that you did well and you instilled the values in kids. And he you know, both my children will look at kids with disabilities differently because they know that they have a brother that has a disability. And that's okay. It's how you deal with the disability. The disability does not define the person and the person comes first and the disability follows. So I always said you don't have an autistic brother, you have a brother that has autism.

Dr. Lisa Belisle:

Alice, if people want to get in touch with you to learn more about

Dr. Lisa Belisle:

how you approach things or how you went through services, can they contact you through Booth Main?

Alice Chaplick:

Absolutely.

Dr. Lisa Belisle:

It's really been a pleasure to hear the story that you've shared. You and I have known each other for several years now and it's always possible to and you pointed this out, I think, when you came in to know somebody without really knowing them.

Alice Chaplick:

Absolutely.

Dr. Lisa Belisle:

So your sharing this story with me is really quite a gift in addition to the gift that you've given the people who are listening. And I hope that anyone who's out there with a child who's struggling and might benefit from your wisdom gets in touch with you. We've been speaking with Alice Chaplick, who works at Booth Main, mother of three, including Aiden, and also multiple degrees in education. Thank you so much for coming in

Alice Chaplick:

and sharing your story and thank you very much for having me. I appreciate it.

Dr. Lisa Belisle:

as a physician, it's been very interesting for me to watch the way medicine has changed within the state over the

Dr. Lisa Belisle:

last 15 years or so. One such change is a very positive one. And this is the work we are doing with autism and other neurodevelopmental disorders today.

Dr. Lisa Belisle:

Here to speak with us, we have Dr. Matthew Siegel, who is the director of the Developmental Disorders Program of Maine Behavioral Health Care. This program is the only of its kind in Maine that serves youth ages 5 to 21 who have mental illnesses and neurodevelopmental disorders such as autism. Thanks so much for coming in.

Dr. Matthew Siegel:

Thanks for having me.

Dr. Lisa Belisle:

I think our conversation began when you and I met at 3:17 Main, and I mentioned to you that it was very interesting to me that you were doing this type of work in part because I have seen in my practice and I know most family doctors have quite an increase in children and adults who are impacted by autism, autism spectrum disorder, other neurodevelopmental challenges. So I think it's really great that you're doing this sort of work.

Dr. Lisa Belisle:

How did you get interested in it yourself?

Dr. Matthew Siegel:

When I was in medical school, I encountered a person with autism and a young person. And I just found myself endlessly interested in trying to understand who this person was. They had a lot of difficulty communicating. And since I gravitated to psychiatry and trying to psychiatry as about trying to understand what is happening with people and their thoughts and emotions and relationships. And so I thought this was kind of the biggest challenge would be to try to understand that with someone whose brain is working in a different way and who has difficulty communicating. And so I got very interested in medical school and began working with children who have developmental disabilities. And I then did my training at Bradley Hospital in Rhode island, which has a very extensive program for children with developmental disorders, including a hospital program, an outpatient program, residential programs. And it really serves the whole state and as a home for those families who have children with these challenges and became really enamored with the idea of trying to. To provide what these families and children need. And so that's what drew me in

Dr. Lisa Belisle:

when I was talking earlier about how

Dr. Lisa Belisle:

medicine in Maine has shifted.

Dr. Lisa Belisle:

I think it's medicine really everywhere, medicine everywhere has shifted. I think psychiatry has been quite a fascinating evolution over time. It used to be more therapy oriented and then it's become very medical.

Dr. Lisa Belisle:

And now it seems to me what

Dr. Lisa Belisle:

you're Doing is quite a combination of these things.

Dr. Matthew Siegel:

Things that is the case. That's part of what drew me into it is I think children who have developmental disabilities tend to either have behavioral challenges or sometimes they themselves have the same problems or mental health challenges that the rest of us can have, such as anxiety or depression or psychosis or other things. And they, in fact, have them at higher rates than your typical child population. And so it's a real nexus of both the medical and biological and the psychological or psychiatric. And so that's really what drew me, partly what drew me to working with these children. It's an enormous challenge. The question of how do you. You detect and then treat and help a child who might have autism and severe anxiety is a real challenge, but one that is really fascinating to try to work on and try to help.

Dr. Lisa Belisle:

There has been a lot of fear and anxiety and frustration, I think, since we've seen either we're diagnosing people more effectively with autism, or we have more people who actually are coming into the world with autism, or probably there's a combination of those two things.

Dr. Lisa Belisle:

We've blamed autism and autism spectrum on

Dr. Lisa Belisle:

everything from vaccines to, I think, poor mothering to infection to. And you're talking about genetics now.

Alice Chaplick:

We really.

Dr. Lisa Belisle:

We don't know.

Dr. Lisa Belisle:

What we don't think is true at this point is we don't think it's caused by something like the MMR vaccine. We don't think it was the thimerosal, the mercury preservative in the MMR vaccine, because initial studies that were put out there, they were actually found to be incorrect. And I think that that information was retracted in the Lancet, which is the medical journal in England.

Dr. Lisa Belisle:

But there's still a lot of fear

Dr. Lisa Belisle:

because we still don't know and we still see all these kids, and it's still. It seems like more and more of us, whether we're doctors or not, are seeing these children and even adults in the community who have autism spectrum issues.

Dr. Matthew Siegel:

Yeah. So I think it's. Unfortunately, one of the great mysteries of our time is what causes autism? And is there an increase in the number of individuals who have autism? And the people who figure that out, undoubtedly that will be an automatic Nobel Prize, because it really is one of the great mysteries. And so we know some things, as you said, we know it appears that some things don't cause autism, such as the initial information that came out about the MMR vaccine, which has been shown repeatedly to not be the case. And some things we do know, but we only know them as associations, meaning we can't prove that they're causal. So we know that advanced parent age, both mother and father age at conception, is associated with a higher risk of autism. We know genetics is involved to some degree because the risk, if you have one child with autism, then the risk of having another is much higher than if you've never had a child with autism. And also, specific genetic changes can be identified in about 25% of children with autism currently. And that number keeps going up every year, slowly. There's other things that have been associated. It appears that low intake of folic acid has a small risk associated with it. Obesity during pregnancy is a small risk associated with it, and a number of other things. However, they all have small risks associated with them, and nothing has really come forward as being the leading thing. And so it may be the case that either we haven't found it, or it may be that autism can be caused by a number of different things or a combination of things. And that the story, unfortunately, is more complex than we would wish that it is. And so we have to keep working at unraveling it. And I think some of the challenge which I think you referred to is that anytime we have an area in medicine or in life where we don't understand it well, what causes it, and it creates a lot of need, then there's a lot of searching about for answers, and that's understandable. But just like in, say, something like fibromyalgia, which we don't understand well and we search for lots of answers for. And unfortunately, it also brings the risk of people putting forward very, very probably unlikely theories and then treatments based on those theories that may or may not have any evidence or validity behind them, which can then develop some concerning situations

Dr. Lisa Belisle:

for individuals who are listening, who don't

Dr. Lisa Belisle:

have family members with autism, but might be exposed to somebody who has autism, say a child in school or say, just a member of the community. What are some things that we can do to be helpful?

Dr. Matthew Siegel:

I think what some parents tell me is just trying to have an understanding that if a child is having a hard time in Walmart or at the grocery store or such, that, you know, I think many of us are. The first thought might be, oh, there's some bad parenting involved or other, but that, you know, there are quite a, you know, there's quite a number of children who there may be another reason. And so just, I guess, trying to be understanding to what the situation is that's going on. You know, you may or may not know what's going on with that child. But at least considering that there could be another reason that a child is struggling and trying to be understanding with that, I think that also what I hear from parents is extending that is they would like to have settings that understand their children better. So we can ask a stranger in a store to just try to be somewhat understanding. But in settings like medical settings or educational settings, really there we should be well aware of what's going on and providing an appropriate environment. And so I think that's part of what we're doing, particularly excited about with developing our new outpatient center is this is going to be a place where one of our goals is for families really to feel at home and to feel like these people get it. And, you know, if my child's having a meltdown in the waiting room, that that's actually expected and not not a problem for us or for them. And in fact, that's why they're there partly is for us to help them. And so that vision of providing a home for people and families who are already dealing with some very challenging situations is, I think, part of what we're really excited about. Other things that people can do. I think it's helpful just that the awareness has gone up around autism and other developmental disabilities. And certainly people can also donate or volunteer with organizations, whether you're supporting research, which is very important, or other volunteer organizations, such as the Autism Society of Maine, which is a wonderful organization and holds walks and other things. So those are other ways to be involved.

Dr. Lisa Belisle:

It is a very stressful situation for families. I have many. I have much experience in my medical practice with families. And, you know, parents will often have to stop working to care for a child or greatly reduce their work hours. They dramatically change the way that they interact within the family. It impacts not just the child with autism, but it impacts other siblings who don't have autism but don't maybe get quite as much attention as they once did. As you said, there's a lot of different appointments people have to go to. So it's a financial burden, it's a social burden. It really, I think, speaks to this greater need for compassion, as you said. I mean, it's not really. Autism is a funny, funny thing because you can't tell necessarily by looking at somebody who has autism that they have this issue. So it's very easy to judge. And if you can take a step back and realize that it's not as straightforward as all of that,

Dr. Lisa Belisle:

I'm really

Dr. Lisa Belisle:

glad that you're doing this work because I was thinking about before you came on the show, I was thinking about the time I spent as a medical student at Maine Medical center and some of the patients we saw in the acute psychiatry intake and how many of them were families and many of them were extremely stressed and they had already been to an emergency facility outside the state and traveling back and forth to try to see their child. And I think the more that you can create this sort of normalized situation, the better off really all families and the community is going to be. Because, you know, it's not a long term solution to ship our people elsewhere. You know, they're all going to eventually end up back in our community. So we're better off trying to understand this now and work with them now.

Dr. Matthew Siegel:

Right. And I think, you know, it takes a great deal to do that. And so, you know, it's about developing the systems of care that we can, even in a smaller state like Maine. And to do that, we need the support of the population, the legislature. Most of these children and families are utilizing Medicaid, and a portion of that is paid for by the state. And so having the support of people to provide that care is a key piece of what we do and what these families need.

Dr. Lisa Belisle:

Well, this brings up lots of different questions that I have. I know that people who are listening will be interested in how they can learn more about the program that you have through Maine Behavioral Healthcare. Dr. Segal, what's the best way for people to get this information?

Dr. Matthew Siegel:

I would say to look at our website, which I believe is www.springharbor.org. there's also a Maine behavioral health care website as well. And there you can see information about our current programs. And soon we will be building out the the webpage for this new center that we're developing and opening in late fall of 2014. And so there they'll be able to see how to access the resources at that new center.

Dr. Lisa Belisle:

Well, I'm really excited about the work that you're doing, and I give you a lot of credit for knowing that this is the path you wanted to follow when you were a medical student, because it's important that we do things that we feel passionate about. That's the only way that we'll be able to make changes. So I appreciate your doing that.

Dr. Lisa Belisle:

We've been speaking with Dr. Matthew Siegel, the director of the Developmental Disorders Program

Dr. Lisa Belisle:

of Maine Behavioral Health Care. I can't wait for your new center to open. And thanks so much.

Dr. Matthew Siegel:

Thank you. You're welcome.

Dr. Lisa Belisle:

You have been listening to the Dr. Lisa Radio Hour on podcast show number 160 autism. Our guests have included Dr. Matthew Siegel and Alice Chaplik. For more information on our guests and extended interviews, visit Dr. Lisa.org the Dr. Lisa Radio Hour and Podcast is downloadable for free on itunes. For a preview of each week's show, sign up for our e newsletter and like our Dr. Lisa Facebook page, follow me on Twitter and see my daily running photos as bountiful1 on Instagram. We love to hear from you, so please let us know what you think of the Dr. Lisa Radio Hour. We welcome your suggestions for future shows. Also let our sponsors know that you have heard about them here. We are privileged that they enable us to bring the Dr. Lisa Radio Hour to you each week. This is Dr. Lisa Belisle. I hope that you have enjoyed our Autism show. Thank you for allowing me to be a part of your day. May you have a bountiful life.