Transcription of Autism #160
Dr. Lisa: This is Dr. Lisa Belisle and you’re listening to the Dr. Lisa Radio Hour and Podcast show #160 Autism. Airing for the first time on Sunday, October 5, 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 Chaplick 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 Marci Booth who has been on multiple times and is a sponsor of our show. We love Marci, we love the words of wisdom she has to offer. She works with a great team including Alice Chaplick. Alice Chaplick works at Booth Maine with Marci. She has a BA in Psychology and Elementary Education, an 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.
We started with saying we know you through Marci, but you are your own person and you have a great story, a very compelling story that we said we’ve just got to bring Alice in and hear about this because we think it’ll be important for other people. Thanks for coming in.
Alice Chaplick: Thank you. When I was approached by Marci if I would be willing to share my story, my first thought was, a deep breath and kind of took me back to where I started. 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- where the success of Aiden is today is why I’m here.
Dr. Lisa: We hear this a lot that, people will come in and they’ll say I’m not really used to being on the radio and I’m not really sure how well I’m going to do. Then when we actually get someone in and we hear what they’ve been through in their life, that’s really the thing. It’s what they’ve been through.
Alice, let’s talk about Aiden. Aiden is six and a half. He’s the youngest of your three children. You have two older children. How old are your kids now?
Alice Chaplick: My oldest son Daniel is 14 and my daughter Olivia is 11.
Dr. Lisa: You had successfully, I guess, ushered your older children through their early childhoods and then Aiden was born. You must have thought, gosh I have a pretty good handle on this parenting thing. I kind of know what I’m doing. Then things kind of shifted for you and you realized this is a really different situation.
Alice Chaplick: Exactly. I thought by the third child it was a shoe in of there really wasn’t much to worry about. 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 typical questions of his social growth. One of the questions they asked was did he have the five word vocabulary that kids typically have at that age.
I actually stopped for a moment and I thought about it. I said, He doesn’t have five words. The nurse in the office said, are you sure he doesn’t have five words? He must say ball, cat- I said, he really doesn’t. I said, what do I do? She said oh don’t worry, he’s a third child, he’s a boy. It will be fine. I sat there and I thought for a second and I said to her, what happens if he’s not fine? What happens if I come in at the next appointment he still hasn’t acquired five words? She said, we’ll look into it. Maybe there’s a delay of speech, she said, but I wouldn’t really think it’s a big deal.
The type of person I am and my personality, more of let’s take the bull by the horns and get it fixed and get it corrected. I said, let’s say that I come back and he doesn’t have the vocabulary. What would you tell me to do? She said, we have a couple of different options. She’s like you can do something private through getting him tested or you can go through Child Development Services which is through the state. It tends to happen quicker versus private.
I said, how do I go about that? She said we would give you the phone number, you would call them. She said it takes awhile to get in, it doesn’t happen quickly. I said, could I have the number please? She said sure. They gave me the number to child development services and I finished the rest of his appointment. 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 them what happened at my appointment and I would like to have my son screened. The woman said, 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. Aiden and I drove to the appointment thinking it would be just a regular appointment. 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 I believe a physical therapist. Aiden was sitting in my lap and they all spoke to me and to Aiden. Each therapist did their own work up, whether it be speech … 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.
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. We’re pretty much set. He has no detachment issues. 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. She had a very cold personality.
After I had Aiden back on my lap and the other therapist had worked with him, she said to me, we have decided that he is on the autism spectrum. 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 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. 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.
I looked into- at that point I had to see what options were there for therapy. 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. I set that up and I had people come into my house. 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 with 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.
After time, I honestly realized that they were there for the best for Aiden. We became like family, they became part of 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. After him receiving services at home for about- let’s see, 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.
At that point I started looking into preschools that Aiden could attend so he would be with peers his own age. That process was an undertaking. I scoured every preschool in the area. 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 to. My last preschool that I visited was the one that was closest to where we lived. I walked in there. At this point I was desperate. 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.
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. When I approached the state, because it’s state funded, 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.
I said, 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 it could work out. 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 we were just a number amongst many. 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.
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Dr. Lisa: We are speaking with Alice Chaplick 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. He got a spot at Shooting Stars. 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. I had to entrust the people at the school, his team of therapists, to take care of him and leave him in their hands.
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 him over to people that you do not know. 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 … Actually he wasn’t even saying please Mom because at this age he was nonverbal. In my mind I’m thinking he’s saying, please Mom don’t leave me.
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. He went to school, at three, he was there five days a week from 9:15 to 1:15. He, at this point, was non verbal. Aiden used a system of communication called the PECS system which was a picture exchange system.
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. 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. He would point to the cabinet of where the drinks were.
I’d say Aiden, here’s your drink. He would fall apart. I couldn’t understand. I was thinking he doesn’t want a drink. What I later learned is he did want a drink, but he wanted his drink in a blue cup. He didn’t want his drink in the red cup. Without a form of communication, I didn’t know what he was saying. It was very frustrating for him as it was for the other people in our family, but obviously more frustrating for him.
They instituted the program of PECS. What they were able to do is give him a picture. If he wanted the blue cup, he would have a picture of a cup that 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. When I went to get everybody a snack, I got him the blue cup, gave him and he was happy. It was that easy.
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. When he gets to school, he continued with the PECS system. 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.
I was of the personality where if they said to me at the end of his day at pick up, 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. 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 Dr. to say now he’s two and he has no language, let’s decide what we’re going to do.
At 18 months he started services because I, his mom, decided that I want to know what’s going on. 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 and 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.
At this point, he is talking, we removed the PECS and things- we’re starting to see that light at the end of the tunnel. 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 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.
I listened, I made sure he didn’t have an iPad because I thought that would help him further- help him acquire more language or reading before they told me basically it would be happening. I followed like a bible of what they told me to do with Aiden. If we were out to dinner and we pulled out our phones and my older children wanted to play games on our phones, I knew that that was not in the best interest of Aiden. My other two children were not allowed to play with phones when we were out in public. As a way to while you’re waiting for them to get you a table, I would not let my other two children do that.
In terms of that with my other children it was hard because they had to learn … 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. I knew it was all for the benefit of their brother. They too now understand how important and instrumental it was in his- where he is at this point.
What I want to tell people is, it may be difficult and it may be sacrifices but it’s not for a long period. If we went out to dinner and Aiden fell apart, I would instruct the kids to say this is what we’re going to do. If it works out we’ll all be there, I said, but if Aiden 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.
We tried to do everything that a [typically 00:23:46] 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. Everyone’s answer to me was, 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. I told them what I wanted from them is I would like for them to understand. If they grabbed a book that the Dr. gave me a list of titles of books that would help people to read on autism.
I gave the information to my family. The type of family that I come from, family’s first. 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. 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 friend support that we had, Aiden 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. 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. 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. He embraced that.
There were those people that looked at him and were unsure- kind of like do I say hi to him? How do I- 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. 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.
Now I’m going to bring you up to he’s in preschool five days a week. The preschool is a special purpose preschool. It also has a typical preschool as well. 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. Then you have Orange Stars and that’s more of your severe diagnosis. You’re one on one.
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 transfer over to Aiden. 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 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 non verbal and 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 of peers and teachers.
Not to say that he didn’t fall apart. A typical kid falls apart if he doesn’t like what he hears. Aiden still exhibited those behaviors, but it wasn’t related to his diagnosis. In the Green Stars he did an amazing job. He attended Shooting Stars for a total of two and a half years. 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.
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. They felt that would be beneficial to Aiden as well. I said okay, I said, but I’m worried about him standing out in the classroom. They said they would not move him or put him in a situation where that would happen. 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: As a physician and small business owner, I rely on Marci Booth from Booth Maine to help me with my own business and to help me live my own life fully. Here are a few thoughts from Marci.
Marci Booth: 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 Marci Booth. Let’s talk about the changes you need. Boothmaine.com.
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Dr. Lisa: We are speaking with Alice Chaplick who is sharing her story and the story of her son Aiden who was diagnosed as being on the autism spectrum.
Alice Chaplick: Aiden, now, was in a typical preschool with- 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, who’s that person sitting next to Aiden? She was around the room giving support when he needed it. The teacher in the Blue Star room, as all the other teachers, were phenomenal. 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. He actually graduated and was registered for Kindergarten like any other kid at his age.
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 bussed. 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.
I have to honestly say, I really had to sit back and think about where he began in true amazement that- I really gave up the thought when they told me that my son was diagnosed being in the autism spectrum. Specifically he was diagnosed as PDDNOS, which is Pervasive Developmental Disorder, Not Otherwise Specified. I really gave up the dream that he would have the ability to be a typical child like my other two children, where you take it for granted.
My kid’s going to Kindergarten and the first thing you think in your mind is my kid’s going to Kindergarten, I’m going to have free time, my kids’ll be in school. 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 five, that he can go to Kindergarten, a typical public school setting, and he can take the bus. That was a dream that I had for him. At this point he was fulfilling the dream that I thought wouldn’t happen for him.
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 tie his shoes? This was liberating for him. It was giving him something that I thought he would never have.
When he graduated from preschool, he was so happy. He understood the bussing 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.
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. It’s amazing I can say that. 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. He has your typical I don’t want to go to school- he would actually hear that from his brother and sister really because Aiden does love school. He did amazing.
When I went to his first meeting in Kindergarten, 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. He ended up- to this day he gets an hour and a half total a week of speech and social work.
Social work in terms of just kind of helping him be proactive on unstructured situations in school like the cafeteria, the playground, how to deal with kids that may be- Aiden will say do you want to play with me on the playground and they’ll be like, no I don’t want to play you. Just your typical situations that kids encounter when they’re off to school. He has an hour and a half. 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.
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 sisters 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. We can’t give him too many abstract things, but he has done amazing.
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. If I had not sought help for Aiden, I know he would not be where he is today. 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.
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. I worked through it. The Maine 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’ll have support of family, you’ll have support of friends, you’ll see the progress in your child and you’ll know why you’re doing what you’re doing. Entrust in people, entrust in your heart and you could have the success that I have had, that we have had, with Aiden.
Dr. Lisa: You’ve made my job very easy. You have a very eloquent and heartfelt way of sharing your story-
Alice Chaplick: Thank you.
Dr. Lisa: And sharing Aiden’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 Aiden? He’s so normal. What’s to talk about? You had to remind them-
Alice Chaplick: Of where we started.
Dr. Lisa: That’s saying something.
Alice Chaplick: Absolutely. My son is 14, so this all roughly happened when he was about 10. Kids are kids, they believe what they want to believe. He just didn’t want to think that anybody would think different of his brother or treat his brother any different. It’s funny how things happen. Daniel, he was in school and he was in the cafeteria. There was a child that he went to school with that was on the autism spectrum and he was aware of it, he connected the points because of his brother. This peer of his was being picked on in the cafeteria. He went and he helped out his peer.
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- your son did that was amazing. 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.
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. I always said you don’t have an autistic brother, you have a brother that has autism.
Dr. Lisa: Alice, if people want to get in touch with you to learn more about how you approached things or how you went through services, can they contact you through Booth Maine?
Alice Chaplick: Absolutely.
Dr. Lisa: 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, you pointed this out when you came in, to know somebody without really knowing them.
Alice Chaplick: Absolutely.
Dr. Lisa: Your sharing the story with me is really quite a gift in addition to the gift that you’ve given the people who are listening. 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 Maine. Mother of three including Aiden. Also multiple degrees in education. Thank you so much for coming and sharing your story.
Alice Chaplick: Thank you very much for having me. I appreciate it.
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Dr. Lisa: As a physician it’s been very interesting for me to watch the way medicine has changed within the state over the last 15 years or so. One such change is a very positive one. This is the work we are doing with autism and other neurodevelopmental disorders. Today here to speak with us, we have Dr. Matthew Siegel who is the director of the developmental disorders program of Maine Behavioral Healthcare. 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: Thanks for having me.
Dr. Lisa: I think our conversation began when you and I met at 317 Main. 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 Dr.s have, quite an increase in children and adults who are impacted by autism, autism spectrum disorder, other neurodevelopmental challenges. I think it’s really great that you’re doing this sort of work. How did you get interested in it yourself?
Dr. Matthew: When I was in medical school, I encountered a person with autism, a young person. I just found myself endlessly interested in trying to understand who this person was. They had a lot of difficulty communicating. Since I gravitated to psychiatry and trying to- psychiatry is about trying to understand what is happening with people and their thoughts and emotions and relationships. I thought this was, 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.
I got very interested in medical school and began working with children who have developmental disabilities. 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. 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 provide what these families and children need. That’s what drew me in.
Dr. Lisa: When I was talking earlier about how medicine in Maine has shifted- 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. Now it seems to me what you’re doing is quite a combination of these things.
Dr. Matthew: That is the case. That’s part of what drew me into it. 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. They in fact have them at higher rates than your typical child population.
It’s a real nexus of both the medical and biological and the psychological or psychiatric. 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 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: 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.
We’ve blamed autism and autism spectrum on everything from vaccines to poor mothering to infection to- you’re talking about genetics now. We really- we don’t know. 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. 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.
There’s still a lot of fear because we still don’t know and we still see all these kids. It seems like more and more of us, whether we’re Dr.s or not, are seeing these children and even adults in the community who have autism spectrum issues.
Dr. Matthew: Yeah. 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? The people who figure that out undoubtedly that will be an automatic Nobel Prize because it really is one of the great mysteries.
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. Some things we do know, but we only know them as associations meaning we can’t prove that they’re causal.
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. Also specific genetic changes can be identified in about 25% of children with autism currently. 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 has a small risk associated with it and a number of other things. However, they all have small risks associated with them. Nothing has really come forward as being the leading thing. 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. We have to keep working at unraveling it.
I think some of the challenge, which I think you referred to is is that any time 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. 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. 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: For individuals who are listening who don’t have family members with autism but might be exposed to somebody who has autism, say a child in school or a member of the community, what are some things that we can do to be helpful?
Dr. Matthew: 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- I think many of us, the first thought might be there’s some bad parenting involved or other … but that there are quite a- there’s quite a number of children who there may be another reason. Just, I guess, trying to be understanding to what the situation is that’s going on. 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. 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.
I think that’s part of what we’re 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. If my child’s having a meltdown in the waiting room that that’s actually expected and not a problem for us or for them. In fact that’s why they’re there partly is for us to help them. 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 is just- I think it’s helpful just that the awareness has gone up around autism and other developmental disabilities. 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. It holds walks and other things. Those are other ways to be involved.
Dr. Lisa: It is a very stressful situation for families. I have many- I have much experience in my medical practice with families. Parents will often have to stop working to care for a child or greatly reduce their work hours, 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 quiet as much attention as they once did.
As you said there’s a lot of different appointments people have to go to. It’s a financial burden, it’s a social burden. It really, I think, speaks to this greater need for compassion as you’ve said. 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. If you can take a step back and realize that it’s not as straightforward as all of that.
I’m really 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. 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. I think the more that you can create this normalized situation, the better of really all families and the community is going to be. It’s not a long term solution to ship our people elsewhere. They’re all going to eventually end up on our community so we’re better of trying to understand this now and work with them now.
Dr. Matthew: Right. I think it takes a great deal to do that. It’s about developing the systems of care that we can even in a smaller state like Maine. To do that we need the support of the population, the legislature. Most of these children and families are utilizing Medicaid. A portion of that is paid for by the state 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: 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. Siegel, what’s the best way for people to get this information?
Dr. Matthew: I would say to look at our website which I believe is www.springharbor.org. There’s also a Maine Behavioral Healthcare website as well. There you can see information about our current programs. Soon we will be building out the web page for this new center that we’re developing and opening in late fall of 2014. There they’ll be able to see how to access the resources at that new center.
Dr. Lisa: I’m really excited about the work that you’re doing. I give you a lot of credit for knowing that this is the path you wanted to follow when you were a medical student. 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. I appreciate your doing that.
We’ve been speaking with Dr. Matthew Siegel, the director of the Developmental Disorders Program of Maine Behavioral Healthcare. I can’t wait for your new center to open. Thanks so much.
Dr. Matthew: Thank you. You’re welcome.
Dr. Lisa: You have been listening to the Dr. Lisa Radio Hour and Podcast show number 160. Autism. Our guests have included Dr. Matthew Siegel and Alice Chaplick. For more information on our guests and extended interviews, visit D-O-C-T-O-R Lisa.org.
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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.
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