The Life Autistic Documentary

♪♪ This program is part of the Move To Include Initiative made possible with support from the Corporation for Public Broadcasting, a private corporation funded by the American people. ♪♪ The Max and Helen Guernsey Charitable Foundation, in support of educational programming on statewide Iowa PBS. ♪♪ Tyler Leech: Autism Spectrum Disorder affects how an individual processes information and interprets the world. As the prevalence of autism increases, so do efforts to understand and provide assistance to those affected by ASD. The Life Autistic series explores the successes and challenges of individuals at different life stages. My name is Tyler. Learn about my story and meet others on the spectrum from the very young to the elderly living The Life Autistic. ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ Sure, thank you for telling me! More bubbles! ♪♪ Lindsay Ward: The diagnosis of autism talks about significant impairment in communication, socialization and this last category of these restricted, repetitive and stereotypical patterns of behaviors. Steve Muller: Autism isn't developmentally delayed, autism is a different operating system. Think of it in terms of it not being right or wrong, but just a different way that people take in information, and how they organization that information, and then how they share that information with other people. And these are all things that are impacted by autism. Leslie Rogers: So I think early intervention is one of the most important things that we can direct families toward or identify for families when they get started. Kids grow and they start with foundational types of goals and needs and really those grow on each other. So I think the earlier you can intervene, the better it is to build those foundations and those blocks that they need to succeed as they grow. ♪♪ Sherilyn Kimzey: I tell him goodnight every night and he says, night night, I love you. That's, you know, something I did not know I'd ever hear so that has been huge. He is always making just strides forward and forward. Uh-oh, I didn't hear you say go. Ready? ♪♪ Set. Go! Go! Sherilyn: He has always been very, very happy. But there was a lot of moments of anxiety and stress and things that we are seeing a lot less of and I think that is because he is just kind of figuring out how to interact with the world better. Out came the sun and dried up all the rain. So Itsy Bitsy Spider climbed up the spout again. Sherilyn: I can't imagine my life, our lives, how it was a year ago just because it's so different. We still have a lot of work to do but he is just marching along making huge, huge strides. ♪♪ Sherilyn: So my son, Fin, he is four years old. He has autism. ♪♪ Sherilyn: He is very, very inquisitive, very curious about the world, mostly items, objects, not necessarily people so much. It's so overwhelming in that first beginning stages because it's a life you never really could have even planned or you don't even think about what a person with a child with autism does to help them, you just don't think about that. He was a very easy, happy baby, nothing alarming. As we started to kind of introduce solid foods he had a really big aversion to it, kind of gagging. And the biggest kind of red flag was there was no talking at all. He just didn't have a lot of even really babbling. Mama. Sherilyn: We didn't think autism because he did always give eye contact, gave kisses and was affectionate. I think it was probably his 18 month appointment his doctor suggested a developmental doctor and at that point things were kind of popping up a little more, he's flapping his hands and spinning around in circles and things like that. Hi buddy! Hi! Lindsay Ward: Fin is a hard worker. He is going to try really, really hard to do what you ask of him -- What do you say to mom? Ma! -- and this environment is all new to him at the Children's Autism Project. So to come in and engage with all kinds of new toys and new people and new kids really does tell you a little bit about him as a person. It's empty! That's a light. Sherilyn: We go five days a week here from 9:00 to 11:30 and then he goes over to ChildServe and they have an Autism Day Health Program. So during that time he is there for five hours. You're popping them! Lindsay: The research on early intervention in autism is profound. The earlier a child is diagnosed and intervention can begin, the more likelihood that you'll have the most desirable outcomes. And the most desirable outcomes is to be as independent as possible. Pipe cleaner. Pipe cleaner. Good trying. Lindsay: So in this case with Fin one of the most significant barriers for him is that he doesn't have a concept of safety. It has been one of our major focuses is to teach him to stay with us without holding onto our hand, without running into other rooms. Stay with me to the lion room. There you go. That's staying together. Lindsay: His other area of big need is his communication skills. He has recently learned to make some level of vocal language and to get his needs and wants met. However, he is not always understandable. Say clean -- Clean -- -- er. -- er. Clean-er. Clean-er. Lindsay: Being understood is so important because it also is what establishes trust and he comes here and he needs to trust that when he says something his words have power so that later in life when he's older, when he really needs to tell someone that something is wrong or he needs help with something, that he has that built in relationship of communication. Lindsay: In addition to that, behaviorally there's some challenges. He engages in some ceriodopy and you might have seen that with the pipe cleaner where he kind of flips them around in front of his eyes. And when he does those types of things he disengages from the people around him. Sherilyn: Realistically you have to kind of keep in the back of your mind his future, you have to plan for will he need assistance far into his adult life, we don't know that because that is kind of a looming thing that you don't want to think about as far as when I'm gone what will happen with him. Will he be safe? Will he be loved? Will he be taken care of? Or will he be able to do that himself? What are you doing? What are you doing? What are you doing? ♪♪ Sherilyn: He'll be six in June. He is actually going to start kindergarten this fall. It's like you almost can't imagine how things were just 12 months ago. It's crazy. He has always steadily made progress but the amount of progress that he has made is what is just so remarkable. It is really, really important too to be in that intensive therapy world because that is how you see progress. Everybody has to be on the same page working really, really hard to get him to a point where he is able to be the best he can be. A yellow star. A yellow star. You got them all! High five! Good job! Jaclyn James: So, Fin not only receives speech therapy here twice a week, he is also receiving occupational therapy and he is also receiving feeding therapy. He is getting a lot of interaction with our therapists and his teachers. Today he asked for assistance multiple times from me and he requested for different objects or activities he wanted to play with. So I would say in the last year and a half he has hit this explosion where he has just started to speak more and use his voice to change the environment around him. It has been really cool to watch. One, two, three! Jump! Yay! Sherilyn: One of his behaviors that we really, really dealt with was screaming, a lot, covering his ears and screaming. And as he has made huge progress in communication especially -- Oh, it's all gone! Sherilyn: -- that has gone way, way, way, way down. So his distress level I would say and his anxiety level, that is all going down. Fin works so incredibly hard. Every little milestone that we meet with him or every goal that we meet is so huge. You can't help but feel so proud and happy and excited. And there are things that in a typical household wouldn't be that big of a deal, but to us they are such huge victories. ♪♪ Evelyn Horton: So there are some children who appear maybe from the very beginning that something just isn't right. Then there are others who we refer to it as a regressive form of autism, who appear to be developing in almost all ways, hitting their milestones, until somewhere around that second birthday, in those children a set of skills and activities that used to be in place just stop happening. It may be gradual over time. There are children who literally were saying words and who end up non-verbal and they lose those skills. ♪♪ Linda McTaggart: When the two were born they did everything on time, crawled, walked, rolled over, everything was pretty much almost a week apart between the two. I can't even tell you when he really went downhill. All of a sudden it just seemed like Jack just was miserable. And that's what is hard, your child is developing right along and all of a sudden they just kind of go down. ♪♪ Find the paper. Can you color? Linda: Jack is three years old. He loves to color, which is a new thing that he's just getting into. He's starting to clap, which he never did before, and stomp his feet once in a while. There are certain songs that he really loves. ♪♪If you're happy and you know it then your face♪♪ ♪♪will surely show it.♪♪ ♪♪If you're happy and you know it clap your hands.♪♪ Linda: When Jack was little we couldn't even get him to sit. He would just run off and be crying. He didn't want to sit and do anything, didn't play with toys appropriately. And now if you give him a reinforcer like his shaker he'll sit. ♪♪ Linda: In my immediate family is my husband Shawn and we have a six-year-old Max. My oldest son Max is on the autism spectrum as well. And the Jack has a twin sister, Josie. All done. No, you're not all done. Yeah! Linda: Where he's at now is he loves school. For him to take the numbers 1 through 10 and they can be mixed up and he can line them up, a year ago I wouldn't have thought he could do that. Good for you! Linda Pawson: Jack is a kindergartner here at Northeast Elementary School and he's in the general classroom I would say about 80% of his day and then he comes in here for a lot of intense one-on-one work with his goals right now. Jack right now is non-verbal, that is how I would classify him. He does have some words but he's not using them to communicate so much as he's using them just to identify certain things around the room. Pig, pig, pig. Pig. Pig. Pawson: Jack's strengths right now in the classroom are his letters and numbers. He is really just fascinated by letters and numbers. It seems to be characteristic of children with autism that they do like numbers because the order of numbers is never going to change. He is using a piece of assisted technology right now. He has had it for about four weeks. If you want a drink, tell me drink. Drink, please and thank you. Good job, Jack. One of the biggest things that I would like to see for Jack is for him to have a way to communicate. Right now he's not able to let us know I'm hurt or I'm sick or I'm hungry or I'm grumpy right now, just leave me alone. He doesn't have a way to say those things. Linda: Jack has a one-on-one associate, which he needs because of the fact that he could run off at any point if somebody wasn't watching him. And still he's not completely potty trained so he needs help with that. Potty training is like my next goal that I would love to have done. That's you! Linda: Keep working on the speech. I've heard him say words. He has said words at school so I know he can speak, it's just getting it out of him. He's just a happier child and the earlier you can start doing intervention the better. That has been huge for Jack. When we started I thought, oh. His goal was to get him to sit for 10 minutes without crying or running off. And then today you see him and he'll sit and do work. ♪♪ Linda: Safety is the biggest thing, especially for a child like Jack, and that is why we do swimming lessons because we want to make sure that he's able, if he gets in a pool or gets into a pond or something, that he can get up and get back to the side, like if he fell off a dock or something, because that was my biggest fear. ♪♪ ♪♪ Heather Lynam: I have had Jack on my roster for the last year and a half. When I first got him as an eighth grader he was displaying some more negative behaviors whereas he was maybe having some self-injurious behaviors. He got upset, he would maybe hit his head a little bit. He had, we called them vocal aggressions. (vocal aggression) You're okay. Heather: Sometimes he would leave the area where he was supposed to be because something else was bothering him or he wanted to just get out of work. Jack, over here. Get your tray. It's okay. Get your tray. What animal? Yeah. You say it. Pig. Heather: We're working on him communicating more, so rather than the behaviors being the form of communication, we're having him use his augmentative alternative communication device to say what might be bothering him or ask for a break. I would describe him as low verbal. So he has the ability to speak and we hear that often in little snippets or short little phrases or one word answers. Rabbit. Good. Rabbit. Good trying, Jack. Heather: But when it comes to having a conversation, that is something at this point in time he still has a little bit of a wall in front of him that we need to help him jump over. Hands down. Nice hands. Heather: One of the things that Jack does communicatively is he reverses his sounds or he'll put an initial sound at the end of a word. So saying fish is very hard for Jack, it sounds like sh-shish, because he's not sure about exactly where to have proper mouth placement. Fish. Yes, there it was! You got your sounds. Good job, Jack! Heather: I would say Jack's area of strength is doing work tasks that are very repetitive, that have a clear answer. Fourteen. Fourteen. High five, good job. Sixty-three. Sixty-three. High five! Good job! Heather: He needs to know here's how I start it, here's exactly how I do it and here's how I end it. You do see that no matter what abilities or disabilities the students have they are teenagers so they're going to have the same feelings that a neurotypical student might have. Jack also sometimes struggles with understanding social cues from other people. One of the biggest challenges is he has feelings that he doesn't know how to appropriately display and communicate with us. So we're trying to help him navigate when you're frustrated this is what you could do. Heather: We also really hit up the living component where we're working on hygiene or living skills. And one of the big living skills for Jack is making his lunch. So we're trying to help him understand it's your lunch, you need to be the one that makes it, because as an adult if he's hungry I want him someday to be able to go to the kitchen and do it on his own. It's scary at times to think about that. But it's a skill that he needed to have last year. ♪♪ Where was this child as a three-year-old? As a seven-year-old? As an eighth grader? ♪♪ Heather: Everything we do and all of the goals from here on out are very much aligned to what does Jack hope for himself in the future, what do parents hope for him in the future and how can we meld those into applicable goals that will make a difference for him for the rest of his life. Linda: Probably down the road when he's 18, 19, 20, if he's still where he needs full-time care what do you do? Is there places that he can live, that he can have help where he can go out and get a job and come back and live somewhat independently? That's probably the biggest goal and the biggest fear. ♪♪ ♪♪ Kerry: I definitely think he knows he is different. But understanding what role autism plays in that is going to be a difficult conversation. Adam: I don't think he necessarily feels bad about it or feels sorry for himself. Generally he's a pretty happy-go-lucky kid. ♪♪ Kerry: Kids even before a year start to babble and Brandon didn't even babble, he was just silent unless he cried. ♪♪ Kerry: As he progressed we still had no speech and that was really kind of a huge red flag for us was that he wasn't saying anything, no words, no sounds, nothing. ♪♪ Kerry: In the meantime we were having some more tantrums and really difficult behavior. He was difficult to take out in public. We kept adding therapies and so we started with speech and then we added OT, occupational therapy, and then we added feeding therapy. Yes, and then we added the Children's Autism Project here. So for a time he was essentially doing four different therapies. But there comes a time where we can't do it all anymore and we have two other kids who are now in activities. Carter plays basketball. Jaina does dance. And there is a lot of guilt where am I doing enough? And trying to balance all three of them at the same time. ♪♪ (television in background) Kerry: Brandon is obsessed with Mario, Mario Brothers, Super Mario. He loves every Mario game and that has been an interest of his for a really long time. And if we let Brandon, he would play video games all day, every day. And so we work on rotating different activities throughout our day so that he gets some time with the electronics but then also has time to go outside or read or cut paper or some of the other things that he likes to do. Let's do some scooter. Does that sound like a plan? Yeah. Yeah? Now he'll probably want to be done. I can't take it anymore. Oh really? Is that rough? Yes. Yes. How about, tell you what, we do a little bit of chalk and you can sit and also see Super Mario. Do you want to do it on the driveway? There's no sun. So you don't have to worry about getting sweaty. Okay? What do you think? Do you want to go find some chalk? Green scene? Yeah. What's green scene? It's kind of like a mix with green and yellow. Yeah. Mom, can we go back in yet? Not yet. You're doing a good job. I need a timer now, okay? No timer yet. What do you think? After this chalk? Maybe after the chalk. ♪♪ Kerry: Middle school and high school are tough socially for anybody and for him the gap will get wider as kids start to be interested in movies and music and things like that and interested in boys and girls and he's not going to have those interests. He's still going to be playing Mario probably. And so friendship is really hard and that is a concern I have for when he is an adult too. ♪♪ Adam: Being the parent of a special needs child is a huge stress on day-to-day living, a huge stress on relationships with ourselves, each other, with friends outside of our family, which makes us a very tight and close knit family and there's a lot of love between the five of us but it doesn't come without its challenges. ♪♪ ♪♪ What color? Green. Green. I don't have any green. Kerry: The Children's Autism Project here really though has changed our lives. I don't know where Brandon would be if we had not spent the past five and a half years here. Ask for a break if someone is loud. Perfect. Shelby: An area that Brandon really struggles with is understanding why people engage in social behavior, and especially why they engage in behavior that he doesn't like. So when Brandon hears a baby screaming in a public location he will get frustrated and attempt to yell at the baby and tell it to stop crying. He doesn't understand that they're not out to get him. And so we do a lot of perspective taking on why is this person upset? How is your behavior impacting them? My name is Brandon. I like to play the Wii. Shelby: Brandon is pretty famous right now for saying, it's no big deal, whenever something happens and that is something that we taught him to cope with those challenges. Every year I think we push Brandon on some phobia and some fear and he always comes out on top. You're going to lose. Do you think you can do that with decimals? Let's go ahead and do this problem today, please. How do we say that first number? 32 and 1 -- Thousandth? Tenth. Times? Times eight-tenths. Good job. Jackie: I am Brandon's general education teacher. He is in my classroom 80% of the time. 20% of the time he is in special education. He really loves math, anything on the computer. I could see him just continuing his love for computers and just being a whiz on the computer. He's a very good speller. He's a very good reader. It's the comprehension side of reading that is a little more difficult, especially as books are getting more challenging and there is a lot more inferring. But my expectations for him in the classroom are just like everyone else's and he really rises to the challenge. (door opening) Go ahead. Show us where your next room is. Show them the way. This way? Yeah. Okay. Yeah. Over there. Room is right here. Okay. Tricia: Brandon is only in the special education classroom for 30 minutes of reading instruction and 30 minutes of social skills instruction, so to work on that social/emotional behavior piece. He now is working on over the last year having a conversation and being able to start a conversation with his peers and to carry on the conversation, how to appropriately end it and not just get up and walk away or saying I'm done. Highlight. We're going to highlight. You got it. Tricia: Brandon is the only student that I've ever had in 22 years to start from kindergarten through fifth grade. He has grown a lot from this little kiddo that didn't talk a whole lot, just trying to get him to work and stuff, and then to this guy who now he talks and he'll have a conversation with you and he'll ask you questions, greets you every morning. It will be amazing to watch him over the next seven years to see what he does for sixth through twelfth grade. Adam: We know he's going to have limitations, we just don't know obviously what all those will be. Long-term what happens when we're gone? What will he do once we're not around anymore? Kerry: That also makes me emotional. That is what keeps me up at night is what happens when we're gone? He has two amazing siblings but that's a lot of pressure to put on a sibling too. So we want Brandon to be as independent as possible. ♪♪ Kerry: Brandon has changed our lives and he has had a huge impact on us and I think we have both found a strength that we didn't know that we had. We just hope that by raising awareness and telling our story that people will just be a little more kind, that they will be a little bit more understanding for those who are different from them. And even though Brandon struggles with speech and he struggles with social skills he wants the same things that we do. Sometimes it is really, really hard, but sometimes it is also just amazing because I feel like we really have an idea of what is really important in life. And sometimes it's not all that superficial stuff. And if people could understand that then I guess we've done our job. Is it done? ♪♪ Lisa Daniel-Way: Siblings of children with autism play a really important role for their brothers or sisters. They often are models for developmental skills that their sibling might be lacking. And because of that they often are the catalyst for their sibling with autism developing communication skills or social or play skills. They also are often their sibling with autism's first friend or maybe even their best friend, and quite often their greatest defender. Peter F. Gerhardt: Working with adolescents is particularly challenging only because there is an end to the fiancial support. When they graduate at the end of their 21st year or on their 21st birthday, the world changes. It just gets overwhelming when we sit down and think about what we have to do in that very short amount of time. But we have to get better at it, we have to get better at this whole thing because when I look at adults, we have this growing number of individuals, that leading edge of the epidemic of autism diagnoses when all of a sudden everybody was like, oh my God, there's so many kids with autism being diagnosed. They're all becoming adults now. Leslie Rogers: I've also been here long enough to know some children that have started when they were in preschool and now are transitioned into high school and doing so well, and even going to college or other dreams that maybe they had for their child. ♪♪ We are working on some job skill related things, anything hands on with Matthew is great. He is on more of a functional learning program now so we can start kind of looking past high school what are things going to look like. ♪♪ Melissa Shields: Matthew is a 9th grader right now. I've had him since he has been a 6th grader. He comes to us from Corning, a different school district. Matthew is a lot of fun. He has got a very bubbly personality. ♪♪ Melissa: I know that when he first came to us mom was worried because that wasn't always the case. However, I think we've kind of gotten his learning style pegged a little bit and we try to capitalize on that. And he's one of those kids that really does like school. He comes here, you'll see when he walks in the door, he'll have a smile on his face. Do you guys like learning? Yeah. Matthew, do you like learning? ♪♪ Yeah, you do, don't you. Very good. Melissa: He's somebody who can be distracted very easily. We are working on communication and in the past if we've ever seen any kind of adverse behaviors or anything like that it has never been in a mean way. Honestly, it's just him trying to communicate. And so for the last several years we've just seen a steady increase in his abilities. Matthew, can you put the pennies in the penny bag? ♪♪ Good morning, Matthew. Melissa: Because communication is a deficit, he has his communication device, his is more of a physical non-verbal. I think if he had the ability to make his vocal cords work in the way he wanted to he would because you'll see him, he will try to say words. He very much understands how to use his communication device to communicate with others, which is really cool, he uses it at school, he uses it at home, he uses it when we go to our community outings or community experiences. Melissa: We do run into situations though where we're just really not sure what he wants. I'm not sure what he's wanting. Which one? Which one? Melissa: They have so much going on with their sensory systems, the lighting, even just I'm sitting here looking at you, they're taking in all of that and then all of a sudden they literally could not hear you. Matthew kind of had been like that, in the past you could tell he was taking in all of his surroundings and his environment, but now he's got that focus down to where he can actually really dive into what the person is saying and go beyond those scripted messages that we work on, kind of coping with those sensory systems. Six. Yes, very good. Melissa: As an adolescent, Matthew goes through all of those changes every other teenage boy would go through. We're starting to see him go through some hormone and puberty changes. He's going to eventually here need to learn how to shave, there's different hygiene things that we're going to need to start learning, or he's going to need to start learning. So we'll work on that at school, alongside mom and dad at home. But hormones and puberty is the biggest thing because that in itself causes more attention issues, it causes my body feels funny, I don't know how to deal with that. All of these things are going so it's more sensory challenges on top of what is already there. Good job. Brush your teeth. Melissa: You'll see I also work on a lot of sequencing things. So if you think about jobs that we do every day, usually they have an order to them. So just anything that we can do to help Matthew understand that there is an order and a purpose to everything that we do. Melissa: Group work, which is a huge thing that we have been able to accomplish this year and his attention has greatly increased. We work on the social aspect of it, so it's not just the content of what I might be reading or teaching, it's more of the body awareness, the social skills if somebody else is talking whether it be a peer or an adult can I turn and actively listen in hopes that they'll keep capitalizing on those skills and then be able to use that outside of our room. It doesn't do me any good if they can do it here but they can't do it in the hallways at school or when we do our community experiences. Push the button. (machine running) Melissa: Our school and our level three program does have a coffee shop that we run. We always make our coffee shop baked goods. Like today it's muffins and we have breakfast enchiladas. Melissa: We do deliveries between our high school, our elementary and our courthouse downtown. It's a great way to work on the social and the communication goals that we've been working on here to transfer them out. It also works on money skills. I always like it when I get other teachers that will stop me in the hallway or staff that will email me or even like we go to the courthouse, it's a small enough town, everybody knows you, they'll say we can really see the progress your kids are making, which is really cool. That's a number. So now we're going to go for the day. So I need you to look, look first. Can you find the same? What is today? Wednesday. Awesome, today is Wednesday. Melissa: In the morning we do coffee shop and then it goes to calendar and we have a little bit of a calendar daily news time and then I always have a morning walk. It just was something that kids started asking for. Just getting out of this setting helps them to be able to come back and focus. So instead of doing like ten or fifteen minutes of group work, this year we have been able to get upwards of 45 minutes at a time. So this morning walk has kind of provided an extended learning ability for my students. Melissa: Matthew is my first student I've had who is going to be able to go to camp, Camp Sunnyside. He does well in new settings for the most part and he loves to be outside. He is a kid that will go play with the bugs on the sidewalk and he's kind of all boy. So I'm really excited that he gets to go. (laughter) Sherri Nielsen: I think Easter Seals Camp Sunnyside really supports individuals who haven't had an opportunity to be away from home by giving them a safe environment. For some campers they come and it is their first time away from home and they are very apprehensive and they don't know what they want to experience or do and perhaps they're someone who needs that one-to-one support to be successful in the camp environment. Sherri: What we want to do for every single person is give them an opportunity to do something they haven't done before because when you do something for the first time and you're successful it builds confidence. And what we know is the confidence that they experience here at Camp Sunnyside goes back with them in their communities, in their schools, in their work and they not only have more confidence to try new things but they also experience more success and that is what camp is all about is creating that environment where you are successful. Melissa: Matthew is getting older, now we're looking at more specific job skills, specific activities that he might need to know how to do to be successful. And in Matthew's case it is living, learning, working that we're focusing on more now so we can help him be successful beyond high school. So building those skills that he could potentially need in the workforce. Melissa: We don't have it really specific right now because as he continues to grow and show us things that he likes and doesn't like, there is no doubt in my mind that he will be successful in the workforce. ♪♪ Angela Book-Glynn: I think that when you are relating to someone who doesn't have speech or is very limited in their verbalizations it's difficult. You don't get that reciprocal back and forth, easy conversation. I think that people need to remember they are listening, they are hearing you, they are feeling it and they need to have a voice. I like that. Yeah, you do like blocks. You pick them a lot. Very good. Dr. Scott Atwood: Each of us has a communication difficulty of some kind whether we're verbal or non-verbal. And one of the most frustrating things that we experience as humans is the inability to express ourselves the way that we need to. Sometimes we nail it and sometimes we miss it. So be patient and seek to understand what the person is communicating. Steve Muller: One of the things people talk about with autism is theory of mind. Theory of mind is the ability to look at the world from someone else's perspective than your own and realize that they are perceiving things differently. Muller: We've got to stop looking at the world from our own perspective and saying, that's what is right or wrong and recognize the greatness of saying, somebody looks at something different, processes information different, there's value to them being a part of us. ♪♪ Courtney, do you want to strum the guitar? Good job, Courtney. Kris Steinmetz: People always ask you, even now as Courtney is 29, people will say oh, what does she do or where does she work? And so we still are explaining that she lives in a group home in our neighborhood and goes to a day program and about her diagnosis. From where we started to where we are now it's huge for her to be able to have those services and to have that full life and live independently in a group home. And for us we're still kind of proud to be able to say that. ♪♪ Kris: Courtney had different traits of autism right from day one. And she was our first born so we kept thinking oh, maybe she'll get through this, or things will be a little bit different. She did not sleep. She never played appropriately with toys. When Courtney was 2 we realized she had taught herself to read and she could read and spell everything. She cannot communicate, could say a few words, she would list what things were. When Courtney was 20 months old our second child was born and slept through the night, liked to be held, things were very different. And so at that point we knew something was off with Courtney. And then when she was 3 she was formally diagnosed at the University of Iowa Child Psych at the Autism Clinic. ♪♪ Kris: After you receive the diagnosis there is a time where you're going to go through some grieving and that is because maybe the future that you had planned for the child is going to be a little bit different. And so you just have to remember that you aren't in this alone but that you're really important and so is your child. Kris: When Courtney was young she was very active. When she turned 14 and started having seizures she also received an additional diagnosis of epilepsy. She did slow down. It wasn't even really a progression. It was just pretty quickly when seizures started and those medications that she was much more careful, much more slow. Away. Away. There you go. She still gets excited and can be a little excitable, but it's pretty short-lived. Can you see it? Away. Away. You ready? Here's the ball. ♪♪ Kris: Courtney is the oldest of three in our family. She adores her siblings and they adore her as well. In high school our son wrote an essay about how Courtney was his hero because she could face life always being positive with everything that she dealt with. All right. So story book. What does this say? Good girl. Kris: When we started to think about possibly having Courtney moving out of our home she was 23 and it was just a huge decision. It took about 2 years before we found a house where we could have a group home and felt that we could turn over the care to the staff of Christian Opportunity Center. She made the transition much easier than my husband and I. We still have her come home on weekends. A carrot. Carrot. Brent Schulte: They are just regular homes in neighborhoods. And so to support these individuals we wrap 24/7, 365 day a year care. I think Courtney has made gains. Yes, she has support and different things, but we all have support in our lives. Hers is just maybe a little bit more care. Good job, Courtney. It's a blue diamond. It's a blue diamond? You think so? Nancy Renee Zolkiewicz: We can't understand really what she wants all the time and she has to kind of think it through. Like if we'll say what do you want and she knows what she wants but she's trying to process it how to say it or how to show it. So I think sometimes that is a big challenge for her. All right. Do you want carrots, cauliflower or broccoli? Broccoli. Broccoli. All right. Show me what you want. Broccoli. Broccoli, all righty, it is broccoli we are going to have. Nancy: I think she enjoys riding in the van because she'll say music, so we listen to music in there, and she may giggle and laugh and smile and you'll hear her talking. (reciting the alphabet) Brent: So she goes to Easter Seals program Monday, Tuesday, Wednesday and Friday. COC transports her from her home to that program. Penny Swartwood: So the official definition is the Life Club is a day program for adults with special needs. Courtney wears a helmet for her safety. Courtney is, she is contagious. When she is saying kind of random phrases or she just smiles spontaneously that is so contagious. Of course I love you. There are some times where she's really active, some other times where she prefers to be a little bit more quiet. Courtney does have peers, friends that she interacts with every day. It typically is those peers and those friends approaching Courtney. There! Good job. Good job, Courtney. Sherri Nielson: Just the understanding and kindness that they share with one another is always very inspiring to me. I think so many of our clients, they have had a lot of barriers in their life, things that they could have used as an excuse, but they're always working to improve their life, they're always working to do better. We go on outings every day of the week into the community. Courtney does seem to enjoy going on an outing and I think it's important for her to have experiences that she wants to have. You hello. Yeah it will fit. Hello. Are you going to bowl? No. One thing that we know about disabilities is that people have the same wants, desires and goals that people who don't have disabilities have. But they're often isolated from the community which they live in. So we want to make sure that people have the opportunity to develop those social skills that allow them to better fit with the community that they're living with. (clapping) Kris: When Courtney was 6 I joined the Autism Society of Iowa. We have really started to move from autism awareness to autism acceptance, to accepting the employee with autism and giving them a chance at work and the classmate and the house in your neighborhood that is a group home that is full of adults with autism who also live their lives and then also always embracing the family who is raising a child with autism. ♪♪ Sally Pederson: It's very hard for people with autism to get jobs that use their skills. In the first place it's very hard to even apply for a job because if you go online and you have autism it's probably very difficult to fill out an online job application. And so right from the get-go you're at a disadvantage. Sherri Nielsen: We know when people have the opportunity to work they have a healthier life in general because the're living with purpose and I think employers want to work and want to bring individuals with disabilities into their workforce, but sometimes they're not sure how to do it. Pederson: I think just for businesses to have a better understanding, that in order to employ people with disabilities, not just autism, but other disabilities, they need to do recruitment. How do we assess them? How do we interview them? How do we get them in the door in the first place? ♪♪ Mike: I was in my 40's and I was single. I basically wanted to find somebody before I died, you know, I didn't want to be, I didn't want to die lonely. So I ran across this person named Margo Mouse and we started emailing back and forth and about 10 years ago this weekend we had our first date. And I knew my life would be changed forever. ♪♪ Mike: My name is Mike Dierdorf and I am 54 years old and I live in Grundy Center with my wife, Margo. She is an occupational therapist at Grundy County Memorial Hospital. And I have two stepsons on the autism spectrum. One is 21 and the other one will be 19 in July. And I am autistic. I was diagnosed at the age of 4 and I couldn't go to school until I had to learn to talk. This was back in 1969 when the ratio was 1 in 10,000, hardly anybody knew what autism was. But I was one of those 10,000. Thankfully I was able to start talking and then I was able to go to kindergarten and I was just integrated and I graduated on time and here I am today. Mike: I did speech therapy at the University of Iowa Hospitals and Clinics. So naturally that's Hawkeye country out there. First down! Mike: I always have been a fan and I always will be. Yes! (clapping) Mike: Hawkeye football is probably my favorite. I can't go to football games or that because it's just too overwhelming for me. So just various situations or if everybody is talking at one time that kind of gets a little challenging too and I may not react appropriately. I'm kind of a homebody in that regard. Another thing too is sudden change. That is something I'm not real comfortable with. I'm getting better at handling it. But it's still something I'm not real comfortable with. ♪♪ Mike: Getting married was obviously a big achievement. I'm very proud to be married and love my wife a ton. Margo: Something I think that helps in our relationship is that inherently I also know what is going to stress him out. He likes the routines and actually it's kind of a calming force in our household because I'm much more spontaneous. He's very steady in his demeanor and so that really works well with the boys because they know that they can depend upon him. They both know that he would go to the ends of the Earth for them. Mike: I would say the successes I've had as a parent is I know what they're going through. Yeah, there's a couple of steps here, so be careful. Mike: Both boys, or young men now, are on the spectrum. Got it working? Yep, it ran about 10 minutes ago so it should run again. Okay. Mike: It can be a challenge, but it's also very rewarding to see not only our relationship grow but watching Alex and Drew grow more and more not only physically but socially and psychologically and that. It's just amazing just to watch them grow up. I've been with Drew over half his life now. I didn't think we would be really that tight when we first started, but boy we're pretty tight. It's time for the alphabet show -- Pat Sajak and Vanna White! Margo: The reason why we can't do this interview actually in our home is because if we were trying to do this at home it would be intermingled with Drew saying, shh, no talk, no talk, no, talk is over, it's done, it's closed. You want to draw it on your board? That's one of your favorite things to draw. Oh, nice! Margo: So with Drew a lot of things get to be closed if they're not what he wants. What about Cookie Monster singing? (singing) Margo: He will have tantrums, meltdowns, those types of things. That's not to say that there aren't wonderful celebrations of the things that he can do. (Drew singing into tuba) Oh, that's a good job singing. ♪♪ Margo: But, I want to make sure that people understand that his world is markedly different from anybody else's. And my world, and thus Mike's, Alex's and Grandma's, is totally different than anybody else's. Autism isn't just a diagnosis, it's not just this problem, it's not that problem, it really is, it totally overtakes your world, in some ways good, in some ways bad. Margo: Alex, who is now 21, he's a little bit higher functioning. So Alex sees this work ethic with Mike, I have a job, I go every day, this is what we do and it has worked out really well because he has been a really great role model. Mike: I commute to Cedar Falls every day. I work at a place called Talk To Me Technologies and it's about a 30 mile commute, about 35, 40 minutes to get from home to work. Shannon Dirks: Talk To Me Technologies is a mid-sized company. What we do is provide speech devices for people with complex communication needs. Shannon: Mike has been here about a year and a half now. Mike's position is manufacturing associate. His main key job responsibility is to disinfect the devices that we manufacture. Mike: I usually go through maybe between 10 and 15 a day, depending on our workload. I usually have enough work to do all day. Shannon: If they come in for a repair or if they come back from a trial or a loan before they can go to the next person he manufactures different components for our devices and then also general office duties as well. Mike is incredibly detail oriented. He has a drive to do the best that he can and really helps us serve as many clients as we can just by being so meticulous in what he does. Really the only accommodation that we have for him is he does have a door on his work area where he spends most of his time because sometimes the environment does get a little loud. So he can choose day-to-day or hour-to-hour if he needs to shut that door and have a little more quiet. Mike came to the company with goals set out trying to help other people with the same diagnosis that he has in the autism community. Mike: It makes me feel really good when I go home at night saying hey, I helped another person gain their communication. And it makes me feel proud to be here. (applause) Mike: I am an autism advocate here in the state of Iowa and I have been doing this since 2013. And my main goal right now is to talk to law enforcement people and safety people. If you hear a child, a child with autism missing, I would check the water every single time. Mike: And for businesses, because hiring autistic people I feel is a good idea, and not enough autistic people are employed and there's a lot of talent in our community that hasn't been tapped into, and what I do is talk to businesses about why hiring a person on the spectrum would be a good fit for their company. ♪♪ Mike: I think a common misnomer that people think about autism is they're not very smart. And that is not true. People get that idea because of the way we do things. But we're not worse or better, we just think differently. Margo: Autism is Mike, a great dad, working, has a great job, goes to work every single day. Autism is my brother who is beyond brilliant. However, with Drew it's grieving the fact that he couldn't get his driver's license, that he's not going to get married, that he's not going to have kids. That is autism. Autism is anywhere in between. So it really is a spectrum. Mike: If you've met one person with autism, you've met one person with autism. It's such a varying spectrum. And I kind of compare autism to snowflakes, no two people are exactly alike. ♪♪ ♪♪ Colby Burt: Gary does recognize that he has autism and he says it makes him think differently. And we've talked about how that's not a bad thing and thinking differently can be seen as a good thing. Gary doesn't want to be seen as autism. He wants to be seen as Gary. ♪♪ Burt: Gary is 35 years old. He is a very hard worker himself. He is incredibly kind, a people person. He always wants to help. Gary does have family. His family are natural supports to him. A lady named Katie, who is his guardian, so not blood family, but she definitely is family to Gary. I've got family now. I've got Katie as a family. I've got all of it. And I get to be Uncle Gary. To who? To Katie's baby. Katie's baby. How old is Katie's baby? He's about 2 months. 2 months old. Do you hold him? Yeah. Yeah. Have you fed him yet? No. Do you change a dirty diaper? No. No. The baby adores me. And then I've got pets too. Oh, Katie has dogs? Yep. Three dogs. Wow. And you know what they like it what I do? What? She lays down on her side and lets me rub her belly. (laughs) Burt: Gary recently moved into a brand new, beautiful home. He lives with three other roommates. What is your favorite part about your new home? Fishing. Fishing? Because you have a pond in your back yard, right? Yes. What kind of fish do you like catching? Blue gill and croppie and bass, catfish. Okay, cool. ♪♪ What else do you like to do? I like to cook. ♪♪ My favorite thing every year is to go to the Iowa game. Who is your favorite team? The Hawkeyes. They've been winning. I! O! W! A! Eight, nine. Burt: Gary is a very curious learner. He is huge into people and loves making friends and having those relationships. Thank you, Tom. We're going to have a cookout this weekend at your house. Yep. Who's coming? Are you having friends come over? Yeah, I told James I would ask you today if he could come. Yeah, absolutely. And so we're going to grill out. What else are we going to do? Maybe fish. Maybe do some fishing? Maybe play some games? Yep. Nice shot. I'm going to lose on TV, Gary. Burt: Gary is interested in dating. We have recently talked about that and he brings up girls and everything. He's interested in it but he just, not right now, which is completely fine. Gary, what are some ways that you're more independent? Doing my own laundry. Okay. ♪♪ What else? Doing dishes. How are some ways that you have grown as a person? No bad behaviors. No bad behaviors. What does that mean to you? No cursing. So you've worked on being angry, right? Mm-hmm. You're a pretty happy person now aren't you? Yep. Yeah. ♪♪ Burt: Not too long ago he always had overnight staff, now he uses an overnight monitoring system so he doesn't require an overnight staff. If he wants to stay home alone, he can do that, which seems small, but for Gary that's huge. This is done. And now to be able to even go out in the community by himeself is massive. I got a good deal on a riding lawnmower. Gary started working on the farm in October 2017. Gary works five days a week, Monday through Friday. Yes, yes. Yes, yes, what? I don't know. Chicken butt. (laughs) ♪♪ Gary works here at Balance Autism as a farm hand all year round. So there's a lot of variety of things that he does. He will seed. Anything that goes into our field is hand seeded by individuals with autism. ♪♪ I like this better in the summer than the winter. ♪♪ Julie Beougher: Gary came to us just needing a little fine tuning on his skills. He needed to follow directions, take feedback, and he has progressed in that really well. That way it doesn't get tangled on my fingers. Do you want to try it? Thumb. There you go! See! When you get discouraged just take a deep breath. Good job using your coping skills, Gary. I'm very proud of you. That was awesome! ♪♪ So you made a black and gold Hawkeye flower basket. Yeah. I bought that one. I bought that one that you made and I didn't know you made it. That's really cool. So when you walk behind the tractor, what are you doing? Making sure the holes are big enough to plant things. Okay, so in the summertime -- We plant. You plant. What kind of plants? Strawberries, tomatoes, a whole bunch of stuff. Do you eat any of the plants that you grow? What kinds? Eggplant, sweet potatoes and stuff like that. What is your favorite vegetable? Eggplant because you can fry it in flour and bread it. Joni Brown: So Gary helps harvest all of the produce. Each piece of produce is hand cleaned, hand packaged and then we deliver it to our community supported agriculture members. At the end of the season we tear apart the fields and we start in on our fall and winter projects. I didn't see that one. What have you been doing at work? Pulling plastic. Pulling plastic. What does the plastic do? Helps the plants grow. Helps the plants grow? And keeps the weeds out. ♪♪ Joni: Gary eventually we want him to work in the community. We're not sure exactly what that job would be. Right now he likes cleaning. So he could get a job in the community cleaning someday. He wants to be out there and he wants to be independent and he wants to do a good job. When he first came here he was very unsure of himself, very argumentative and extremely attention-seeking. Now I can pretty much say hey, Gary, go work on this for me and he'll head that direction. But before it was I can't, I can't, it doesn't work. And so instead of saying I can't, he will flat out be like I'm going to succeed at this. I think now he stands a little taller. All right. Think they'll be okay back there? Yup. Angela Book-Glynn: I think that it's important that as individuals we just relate to each other, as you and I would or anyone, as a friend, a colleague, a co-worker. That's very important for these individuals that they are treated with that respect and dignity of any adult. Dr. Scott Atwood: The biggest challenge I think that is facing aduilts with autism right now are the same challenges that you and I face. It's becoming involved or of our communities. And then I would also say relationship skills, teaching them how to have good friendships as well as intimate relationships. Lisa Daniel-Way: I think that working with people with autism has really helped me to see the potential that there can be for any person. Everybody can make progress, everybody can move into greater independence, more socialization. It might be in a different way, but every single individual does have a potential for growth. ♪♪ Tyler: When I walk barefoot I take in the sensations of the Earth like the grass, rocks and dirt because when you walk barefoot you actually receive positive energy from the ground and it helps calm you down and it relieves the stress of day-to-day life. ♪♪ My name is Tyler Leech. I'm 26 years old. And what I want people to know about me is that even though I have autism I enjoy being around people and making new friends. My autism is high functioning and while there are some times where some things might be a little difficult I think it makes me who I am. Sheri Leech: Tyler was diagnosed when he was 22 months old and he was developing normally with his milestones and all of a sudden I noticed that he wasn't talking anymore, wasn't even saying mama. I was devastated. He had occupational therapy, he had speech therapy, I just took advantage of what was out there and did a lot of networking, a lot of research, a lot of reading. Tyler: Some of the challenges that I have faced were difficulty being in areas with loud noise and a bit of anxiety. It took some resources, a lot of patience and a lot of love because back then I was very impatient with a lot of things and I think there were some times where my family wasn't patient with the way my autism was either. So I think that by having the time to focus on what I needed and to learn from each other I think it helped out a lot. Tyler: I went to college at Des Moines Area Community College, or DMACC. I had a few doubts when some of my classes proved to be a little difficult. But I just put the time and effort into the studies and gave myself some pep talks so I can show myself that I can do it. Tyler: I work at Wells Fargo in Des Moines as an operations processor. So I look at merchant applications, enter their data into our computer system. Brian Tjaden: Tyler is a great asset to us because the work can be repetitive and that is what he really likes. So we'll even give him more volume of work to do just because we know that he'll be able to get the work done on time and accurately as well. Amy Jarnagin: The Diversibilities Team Member Network is one that supports our team members with disabilities. Tyler engages in our team member network as a member. And so we'll have him invited into colleges or into other speaking environments and he might be scared to death to do it and he always says yes to the opportunity to be able to learn and grow. Tyler: I say I'm pretty independent. I cook meals and I do some cleaning on a regular basis. I am able to handle the laundry pretty well. I manage my budget. 7. 17. 27 for three. Tyler: My grandfather and I, we've played cribbage for a long time. In fact, it was cribbage playing with him that I learned how to count. I've got a run of four. Tyler: So these are the ribbons and medals that I've won through Special Olympics. Special Olympics really means a lot to me because I get to meet new friends through the program and also get active. Tyler: I also drive to and from places every day and I never thought I was going to get my driver's license let alone a permit. But I took the time and dedication into doing the driver's ed class and it got me to where I am now. ♪♪ Tyler: I'm a pretty social person. I enjoy going to church. I attend autism walks and events. I sometimes go to different sporting events on occasion. I hope to get my own place eventually and I also want to try to get into the dating world, though it is a little nerve-racking. Sheri: There is a fine line about a parent possibly having their own fear and holding their child back. I think everybody is different. I just knew that my son was going to have a life, the best life he could have and do as much as he could and he is so passionate about being a role model and making a difference for other people with special needs. So I am very, very proud and he has found his purpose and it's just a beautiful thing. He looks at his autism as a gift and I guess so do I, but I didn't always look at it that way. Tyler: My advice to people who have a loved one with autism is to check out the resources that are available to you because they do help in the same way that they have helped me. And just take the time to learn about your loved one and be patient with them because it's a big learning process. And when you take the time to learn about them you might even learn something about yourself. ♪♪ ♪♪ Then leave a little space and put a capital P. Kittie Weston-Knauer: For him, because of the autism, there are just certain things in his life that kind of get in his way. ♪♪ Kittie: But he has figured out ways to make it work. Now, he's not, going to be able to tell you that because he's non-verbal. I think one of the things that we have done as his parents is to help him to understand that he's got to also help himself. ♪♪ Kittie: So our son JP is 38. Here's a young man who exudes love for others and people do really in turn share that with him. Were there four last time we came? Kittie: JP was born in April, so had him going to child care at about five months. And that's when we began to have the medical issues, chronic upper respiratory infections, chronic ear infections. But even before then one of the things that we noted was he wasn't lifting his head on his own. And he wasn't trying to roll over. Now he's a year old and he's not walking and he wasn't developing speech. The doctor referred to it as apraxia, a totally new term for us, because the muscles were not developing as they should, which would allow him to be able to form words. Kittie: The other thing also was our pediatrician had us working with a child psychiatrist because he wanted to be able to get a full picture of what was going on with JP. Now, mind you, he's two years old at this point. He's having the issues with digestion and he's not forming words, he's not walking, he can't hear. He was finally healthy enough at about age two and a half, he was now making sounds, trying to express himself, still using sign language, but we still don't know that he's autistic. But that developmental delay is still there. The other thing was he began to walk now, pull himself up, crawl, pull himself up, walk. Wow, at two and a half he's now walking. ♪♪ Kittie: That was a major step in his life and for us the beginning of relief. ♪♪ Kittie: And so we finally get a diagnosis. He's four and a half and we're saying, wowee, now we know what it is. We all learned sign language because he had no language but he picked up that sign language just like that. He's now able to communicate with us. ♪♪ Kittie: One of the things that I learned at a very early stage with JP was we couldn't just focus all of our lives and our attention on just JP because we also had another son who had interests, who wanted to be out in the world doing things. And then of course we had our own interests. ♪♪ Kittie: We're a cycling family. JP has refused to ride any of the many bicycles that we've ever had. However, whenever we as a family take off just to ride bikes, he's always been with us. ♪♪ Kittie: In 1988 I began racing BMX bikes. And so I never stopped racing bikes just because of JP's autism and I think that is probably one of the healthiest things that I could do because I'm still going to be the mom of an autistic son. But I have that other side, that side that says you name it, you can get out there and continue to do it. So yeah. Love me some BMX, y'all! Kittie: So, JP, what did you wind up doing today? JP: Leaves. Kittie: Okay, you wound up raking up the leaves. And what do you like about the seasons? JP: The fall. Kittie: The fall. Why do you like the fall? Kittie: Well, what do you get to do? JP: Halloween! Kittie: Yeah, Halloween. And what did we put up for you? JP: Dragon. Kittie: Your dragon. And what did you put on the windows? JP: Lights. Kittie: You put the lights. What will we put up next after Halloween? JP: The turkey. Kittie: Turkey. And what season will turkey be? JP: The blow up turkey. Kittie: The blow up turkey. So we'll put up the blow up turkey. JP: Way too early. Kittie: It's way too early now, yeah, I know that. Kittie: He loves going to the theatre. He and I go to Civic Center performances. Kittie: Let's see, here we are. We have, that one, I remember that one, that was a funny one. Yeah. And you remember Waitress? JP: Yeah. Kittie: Yeah. That one's over with. Kittie: He loves looking at the newspaper every morning. Yeah, I know he's got to be reading, but he also looks for symbols and pictures. That's why he looks at the weather because you have the symbols for the weather. Kittie: He enjoys going around and being with other people and that's not an issue for him anymore. Kittie: This afternoon where are you going to be going? JP: The zoo. Kittie: To the zoo. All right. And you're going to be going with your SCL worker, Karly. Karly: Are you ready to go to the zoo? JP: Yeah. Karly: Get to see lots of animals? JP: Yeah. Karly: All right. Karly Summy: Easter Seals Hourly SCL Program is supported community living. So kind of our goal is to get our clients who have disabilities out in the community to work on goals that they have set. So that could be working on their social skills, that could be money management, things like that. Karly: Look at the flamingos. Karly: How do they stand on one leg? (nature sounds) Karly: Those birds. Karly: Those are the kind of birds I'm scared of. They're too big. Karly: Those monkeys are so cute. Karly: Have you been here when they've been swinging? Usually they swing from the top. Karly: JP, are you having fun at the zoo? JP: Yes. Karly: What is your favorite thing we've seen so far? JP: Giraffe. Karly: The giraffes. Would you like to have a giraffe as a pet? JP: No. Karly: No. Karly: What are we on the way to go see? The lions. (lions roaring) Karly: There's another one. Where are the other two? Usually they're always sleeping. (lions roaring) ♪♪ Kittie: One of the concerns we have always had is what would life be like for JP beyond us. What we have to be able to do in our own mind is to hope that we can put together a living situation that will enable him to continue to live the kind of lifestyle that he has grown accustomed to. That's a tough one. And so one of the things we're looking at is how do we make this home his forever home. What is it that we need to do to assure that that would happen where he could have some services that would come in for him? ♪♪ Kittie: We want JP to know that life will continue for him beyond us because that is what will probably happen. And so, for him to know I will still be able to continue to do the things I have been doing for the last 38 years. ♪♪ Kittie: Why do you like to keep going to this? Do you enjoy these? JP: Yeah. ♪♪ Evelyn Horton: For those who are using their behavior as their communication, what you may see is an increase in problematic behavior that means that they are disruptive, their behavior may be such that the family really can't go to eat in public restaurants or attend church services, that this is the point where families are frequently saying, my child has never been invited to a birthday party, doesn't seem to have an actual friend that they have chosen to be their friend. Angela Book-Glynn: It's very common also with people with autism to have a set wrote conversation that they like to go back to. Book-Glynn: They might ask you repetitive questions, ask you that same thing day in, day out. And I've thought about that a lot, and I think if my social skills are awkward and it's difficult for me, I'm probably going to go back to those safe conversations, those safe topics over and over because I can now have a connection and have a reciprocal conversation with you that feels good and feels safe for me. Sally Pederson: I think that people with autism often are looking at the world just a little bit differently than you and I. And so sometimes just to try to put yourself in their place and see what it is that they find so interesting, how they attempt a task that is different than the way you and I might do it. So I think just sort of seeing the world through their eyes is a good way to learn from them. What my husband says is that our son taught him patience. ♪♪ Angela Book-Glynn: When I think about Lynn and where he came from in his lifetime, autism really didn't hit the maps before 1990 a whole lot, you didn't even hear about it. You hear that early intervention is so important. I wonder how much Lynn would have that opportunity for those early interventions in rural Iowa clear back in the '40s and '50s. I think that's really important to think about and how he has progressed in his life and the challenges he has gone through going many, many years without even being known what his diagnosis was. ♪♪ Do you want to put your light on? Casey Ehn: Lynn is 72 years old. He's very, very sweet, laidback and easy going. He's very affectionate. You want a hug? ♪♪ Casey: Lynn loves everything farming from beans to combines to John Deere green, he loves it all. Cow. Yeah! Very good. Very good. Casey: He also loves his morning coffee, and his afternoon coffee. ♪♪ How are you? Casey: Lynn communicates verbally. Typically he will communicate using one to two word phrases and it is very scripted so it's things that he has heard in his past or things of interest to him. What about this guy? Cow. That's a cow, yeah. And what about this guy? Look here. What's this? Oink, oink. Oink, oink. What's that? What is it? Pig. It's a pig. Good job. Casey: He can make requests for things that he wants or needs verbally but typically staff just kind of know what he wants and can help him out. Sometimes he'll point, sometimes he'll lead staff to what he wants. Good job. Casey: Lynn grew up around farms with his family. His father unfortunately had passed away when he was young and his mother was no longer able to care for him because his aggression was too significant. At that time she had moved him into a facility in Story County where he continued to display some aggressive behaviors that were very challenging and the facility was not able to care for him the way that he needed. When Lynn came to us in 1995, and up until last year, he was able to be part of our vocational program on our farm. He really enjoyed that farm work being that he grew up in a farm background. Last year he was working, when he would like to, when he chose to work. Then he retired. I don't think he fully understands the concept of retirement. But it is pretty exciting to think about someone with autism starting from having a lot of aggression and not being very successful in a vocational setting to being independent and be able to retire as a neurotypical person would. ♪♪ Casey: Balance Autism provides a lot of different living opportunities for adults with autism. Lynn transitioned from our ICFID program, which is our campus program, more intensive care, to our home and community-based services, which is in the community and less restrictive for him. Lynn was able to transition into that less restrictive environment because of the skills that he gained through living in our ICF facility. He decreased his aggressions to virtually nothing and he is really just very independent. He does need a lot of cares with hygiene tasks and mobility because of his age, but other than that he is very laidback and easy going so he was able to live in an environment where he has more freedom of choice. So tell me what you want to buy. Do you want to buy milk? Cheese. You said cheese. That's good. Do you want to also buy milk? Yeah. Casey: Lynn has staffing 24 hours a day, 7 days a week. Staff really try to involve the individuals that we serve in every decision-making process that we have and every choice that they would have. With grocery shopping he goes whenever he really wants. Typically staff try to assist them with going grocery shopping once a week and then when they're at the store they follow a grocery list based off of a menu or whatever meals Lynn wants to eat for that week. Careful. Easy. Thank you. Do you want to say thank you? Thank you. Thank you. You guys have a good day. Casey: Guardianship is a challenge with Lynn's age and the fact that he has autism. What happens if he needs nursing home care? What nursing home is he going to go to? Who is going to provide that care for him? Angela: Lynn is in his 70s. He has a guardian that is well in their 80s. This is not uncommon. It is so important that we have somebody set up as a successor for that guardianship and that if something was to happen it's not a fun conversation, nobody wants to have these, but if something was to happen to your guardian you have to have somebody lined up, ready to go, to support your loved one. When you have someone with autism you typically think we're going to work on these intensive maybe behavioral strategies to shape their behavior or change their behavior and then also focusing on those communication skills and the social skills. A lot of people forget that there is actually a life being lived also. So that is really important to us that he is able to do those things. Angela: I think Lynn is an inspiration for anybody. At 72 years old he is still very humble and laidback and he has grown so much with decreasing his aggression to nothing. My advice for family and friends who have a loved one with autism would be to help get that intervention that they need, help them grow their social skills, find a communication system that works for them and they're able to communicate their wants and needs, and also just most importantly is help them live a fulfilling life. ♪♪ ♪♪ Carol: Lainie can certainly become frustrated when she's not able to do something or if something doesn't go her way. And she has never been a person who strikes out at others. She doesn't become aggressive toward other people. But she will turn that aggression on herself. ♪♪ Carol: Lainie will develop a strong relationship, usually it's reciprocal because of Lainie. Lainie is very likeable. You have a birthday coming up? Lainie: Yeah, I'm going to have a party. How old are you going to be? I'm going to be 47. Good job. I'm going to be 47. Carol: Lainie had kind of a rough start to life. When she was five hours old she had her first seizure and I could hear the nurses or people running in the halls and I didn't know what was going on. But I just had a sense that something was wrong with my baby. And then in the morning they came in and said that they didn't think she would live. We were told she would probably never walk, never talk, maybe never roll over. And she did still have seizures. But then they stopped. And she did crawl, and she did stand up, and she did walk at the normal time. But cognitively we could see there was a delay. ♪♪ Carol: When she was five and using the term transitioning from preschool to a grade school is when she was diagnosed with autism. Carol: When Lainie's sister went to college my husband and I decided this might be the time to help Lainie transition into a different setting. People would tell us when your son or daughter is in public school you don't have a clue as to how good you've got it because once you transition into adulthood and all of a sudden the services either are different, have fallen away, it's a shock. Carol: When we decided that it would be in our and Lainie's best interest to find a residential place for her to live, which sure as heck wasn't her idea, it was challenging. You can't play trial and error because you're playing with her life. Hawk: She lives on campus and she has three roommates. She gets along with them. She knows all their names, knows most of their parents' names. On campus we'll typically have two AM staff, two PM staff and an overnight staff. So she's constantly getting that round the clock care. Dorcas: I've worked with Lainie now for eight years. And I've come to understand Lainie. And I don't see her as a person with disability. I treat her like any other person. Dorcas: For Lainie, transitioning from one place to another, it may take her some time before it sinks in for her to transition. But once she gets to that point she will go. You don't want to force her. We can't go because I put the phone on and she hears me do it. We are just going to do some quick -- We can't work, I can't work because my mom, she wanted me to ask Angie a question. Dorcas: When Lainie goes to work, most of the time she vacuums in the main office here at Balance Autism and she also wipes down the windows. Hawk: I feel like sometimes she maybe doesn't get enough credit. She's really smart and she knows what's going on around her. At the end of the day she's a person too. I feel like that gets lost sometimes. Yeah, she has autism, but she has this personality, this very big personality. Sure we can do that together, we can cooperate together. That sounds like a wonderful idea. Angela: Lainie is very social. Once she gets to know you and trust you and has made a connection with you she is very affectionate. She gives the best hugs in the world. I would say Lainie has excellent social skills overall. She has lived in the same home for 24 years with three other women. Those ladies are very involved in going to the movies, out to eat. They have been volunteering at Blank Park Zoo and have enjoyed that. Angie said she loves me. Hawk: Family is super important to Lainie. She is constantly talking about them. Carol: She loves her sister Angie so much. Angie is married and has two children. And Lainie loves her niece and her nephew and her brother-in-law. ♪♪ Angie and Chris can come. How does that make you feel? It makes me excited. It makes me excited. Carol: Lainie's dad died more than 11 years ago. So that was very difficult for her not to have her dad in her life anymore. ♪♪ Carol: When she comes here and spends the day or even overnight or when it's time to return to her home, in the over 25 years that she has no longer lived with me, it's never easy. She got me another CD and it's another -- Is that CD in your bag? Yeah, but can you tell her you found it? It's the other one. Carol: The transition from my car into where she lives is extremely difficult. I know that once she is back in the routine she's okay. She likes where she is. It used to be something I totally dreaded was having to take her back and see her almost despair at leaving me. How are you doing? I have to go visit Angie and I don't like it here. My birthday. You tell him. Today is my birthday. What? It is? I am not going to be here on this horrible day. Angie is having, I have to have a picnic with Angie. Carol: When I took my cell phone to record Lainie going to the dentist she really didn't pay any attention to me at all. She was so focused on not opening her mouth, she didn't care what I was doing. Can we see you teeth? We can't see them when your lips are closed. Carol: Having a health care professional touch her, make her do things that she doesn't want to do probably will continue to be a struggle. Carol: But because we see Dr. Jacobson who has the patience and genuine respect for Lainie and Lainie's inability to behave like any other patient, it makes that trip so much easier. How about one more look here? Carol: In her mid-40's, another thing that I think about as a young woman is going through menopause. Hot flashes, will that be an issue for Lainie? As she goes on into her 50's, her hair is graying and Angie and I used to joke and say Lainie is never going to be gray. Carol: What comes in the 60's? What comes when I'm not here? Which is certainly something that I think we all think about. Carol: And I -- -- started saying something to Lainie about death. ♪♪ Carol: How will she incorporate that into her life when my red car that she still calls a Jeep, which it is not, doesn't come up the driveway anymore? How will she figure that out? And I'm not going to be there to help -- ♪♪ Carol: -- with that. Do you want to show us what's inside your purse? Well sure I could do that. Carol: I think it's important to help others feel comfortable talking with your child with a disability, the acceptance is something that is so important to all of us. ♪♪ Steve Muller: Neurodiversity is a way of saying, how do I bring somebody that thinks about the world differently, that has a different operating system, that processes information differently, into their circle so as they have opportunities to learn and grow as a group they have the benefit of having these folks with different perspectives. Peter F. Gerhardt: In 1990 we had the Americans with Disabilities Act and we have gotten so good at understanding what accommodations are for people with physical challenges. We have curb cuts and handicap parking spaces and ramps and hotel rooms with lights for the fire alarm for people who are deaf. But now what are accommodations for someone with a neurological challenge? What would an accommodation be for someone with Autism Spectrum Disorder as opposed to saying that they have to learn to act differently, which we wouldn't say if you had a physical disability because we can see that. So I think that a lot of the education, the public education needs to focus on how do we learn to accommodate people better so that the can achieve their higher goals as opposed to constantly focusing on them having to change their behavior. ♪♪ For me, I get asked what's my identity. Being a college professor, working in the cattle industry, designing equipment. Autism is an important part of who I am. I wouldn't want to change it because I don't like the illogical way that most people think. But it's not my primary identity. ♪♪ I looked really terrible when I was two years old. Kids can look really bad. And then as you work with them some kind of pull out of it, others don't. But you don't know until you start to work with them. And that's why early intervention is so important. And what I'm seeing as I travel around the country is we're doing a better job on the early intervention but where we're really falling down is with the older kids, teaching job skills, driving, that's going to take longer because of the multitasking issue. I did 200 miles on dirt roads at my aunt's ranch picking up the mail every day, which was three miles away, before I did traffic. A lot more practice in really safe places. When I was four years old I was non-verbal, had all the symptoms of severe autism. I was fortunate to get into a really good early intervention program, lots of turn taking games, teaching me language, teaching table manners, that was done in a much more structured way back in the '50s. What I want to demonstrate is how you walk back by them to get them to come up in the chute. If you've got three-year-olds that are not talking, the worst thing you can do is just to wait. You've got to start working with that kid now. I've seen too many situations where the diagnosis is holding fully verbal kids back because there's a tendency to baby them and they're not learning how to drive, they're not learning working skills. And very often today I have grandparents come up to me and they discover they're on the autism spectrum when the kids get diagnosed but those grandparents had decent jobs because they had paper routes at age 11, learned how to work. Social skills in my generation were taught in a much more structured way. In the '50s we had sit-down meals, you were taught how to take turns in conversation and that is one of the reasons why a lot of the older generation had jobs and kept their jobs. You see, a brain can be more thinking or a brain can be more social-emotional and a certain amount of this is just normal variation. And years ago I said, who do you think made the first stone spear back in the caveman days? It wasn't the yackety-yaks around the campfire. It would have been somebody probably on the autism spectrum in the back of the cave trying to chip that rock and tie it to a stick. What you've got to do with kids on the spectrum is stretch them, stretch them just outside the comfort zone but give them choices. Now, the way I got into the cattle industry is I was exposed to it when I was a teenager. I came from a non-ag background and when the opportunity came up to visit my aunt's ranch mother gave me a choice. I could go for a week and come home if I hated it or stay all summer. Not going wasn't one of the choices. But giving some choices of stretching activities. The other thing we cannot let these kids do is become recluses in their room. They get so anxious they just don't want to come out of their room. Exercise will help on that, I do 100 sit-ups every night. But you've got to get them out doing things. And I've had parents say oh, he got a job at a store and he's just blossoming. You see, a person on the spectrum has lots of memory. So let's compare to a computer system. So you've got the cloud computing memory back here, tons and tons of memory, but a really small chip. Working memory is a problem. And so anything that requires remembering a sequence of steps like maybe doing the ice cream machine at McDonald's, pilot's checklist, and when I worked in a dairy when I was a graduate student they had a checklist on the wall on how to set up the dairy equipment, the milking machine equipment, and I would have been in a lot of trouble without that checklist. That's a real easy thing to do. Let's look at situations in the environment that can cause problems for people with autism and that is lighting. Certain kinds of lighting flickers. I was just in a hotel room the other day that was completely horrible. It had chevron black and white stripes on the floor and compact fluorescent lights and I could see the pattern on the floor going like this. Now, I tolerated it okay, but there are certain people where this would be completely awful. I have some sound sensitivity problems. One of the ways to help get over sound sensitivity is let the kids control it. All right, let's say he's afraid of the vacuum cleaner, then let the kid turn it on and off. Let the kid control that vacuum cleaner where they are controlling that sound and then they can sometimes learn to tolerate it if they control it. I get asked all the time, should I tell the kid they have autism? He's having a great time, I wouldn't bother telling him. And I'm seeing too many kids where their whole identity is autism. And they say, oh I want to be an autism activist and I explain to them, you will be a better activist if you can go out and excel in a job, maybe an engineering job, an art job, writing job or something like that, and then you do the activist stuff. I always emphasize all the things I've done at work and what I learned is I learned to sell my work. People thought I was weird. But when I showed them my drawings and my pictures they looked at that and go, oh you designed that? People on the spectrum usually are good at one thing, bad at something else. We need to be putting a lot more emphasis on building up the area of strength. Talking to the FFA and the 4-H students today just about some basic things about animal behavior. And one of the things I learned from animals was learning how to work. I was not a good student in high school but I learned how to work in my school's horse barn. Big problem I'm seeing today is not learning work skills because I'm afraid that some of those kids today are just ending up getting addicted to video games and they're not going anywhere, they're not becoming video game designers. If they were becoming great video game designers I wouldn't be criticizing it, but that's not where they're going, and I'm seeing a really big problem on not learning working skills. How about walking dogs? How about church volunteer jobs? Find things in the neighborhood that the kid can do that is on a schedule outside the family. I was bullied in high school. I got bullied in school. It was awful. Fortunately, I was not bullied in elementary school. Because Mrs. Deitch, the third grade teacher explained that I had a disability, but it wasn't a disability you could see like having a wheelchair or crutches, and the other kids ought to be helping me. So high school was a disaster, complete disaster of bullying. In elementary school other kids liked to do craft projects, so I had friends who shared interests, this is a really important thing, friends who shared interests. Then when I was in high school and I was still getting bullied the only places I was not bullied was horseback riding, model rockets and electronics. Again, that is shared interests. It's really important to get kids maybe involved in band, the school play, it could be lots of different things. Being a woman in the feed yard industry was much harder than being autistic, way harder. Well, I don't do the bar scene. That's too socially complicated for me. Also I can't hear, I've got some auditory processing problems with background noise and I can't hear. I think what makes my life interesting and worthwhile is work. Also if you quickly walk back by them like that they'll go forward. I was very happy to have a lady come up to me in the airport last night and tell me that she had read my books and looked at some of my videos and that had really helped her daughter. That's something that gives meaning to life. Steve Muller: One of the things that we're excited about is how has the world changed in viewing autism? 25 years ago we were talking about awareness. What is autism? We have moved from awareness to acceptance, that that person in the grocery store is different from me, and I can accept that. I can accept that he handles information differently than I do. I can accept that he communicates differently than I do. Maybe that next door neighbor has autism and I can accept him in my world. The question now is are we getting to appreciation? Can we move from awareness to acceptance to appreciation? What does this person with autism have that my life benefits from? And there are things that they bring to the table. They have a unique perspective. They have an ability to do certain things that I can't do. So how do we tap into those strengths? And that is one of the fun things to think about with our communities today. We don't want to just be in your community, we want as a person with autism to be a part of your community, meaning we're not just visiting, we are your neighbors, we are your co-workers, we're your fellow church goers, we enjoy the same hobbies and interests. So, how do we make opportunties for people to be fully accepted and appreciated? See you later. See you later. ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ This program is part of the Move To Include Initiative made possible with support from the Corporation for Public Broadcasting, a private corporation funded by the American people. ♪♪ The Max and Helen Guernsey Charitable Foundation, in support of educational programming on statewide Iowa PBS. ♪♪

Channel: Iowa PBS

Views: 303,529

Rating: 4.7042727 out of 5

Keywords: Iowa PBS, autism, The Life Autistic, lifeautistic

Id: OCYjZdI0WCc

Length: 114min 30sec (6870 seconds)

Published: Mon Jul 13 2020