Wisconsin Public Television University Place  Community Support to People with Autism Paul White  01/26/13 UP828  cc >> Presenting with Maureen Durkin and Jane Lainhart. And now we're going to make a bit of a switch. You've heard about research that's provided here at the Waisman Center, and you've also heard from Dr. Mallick that we provide outreach. So I'm going to take you into that world. We have a center within the center. It's called the University Center for Excellence, and within that program we have a program called Community Ties. And I've been involved with this, I had the privilege of being involved with this program for 27 years. Now, lately I've been doing more administration over other community programs, but for most of those years, I was an outreach, master's prepared outreach behavior specialist. So that is what I want to talk to you about today is our experience in doing this work. You're hearing about evidence-based practice today. 

We try to base our work in the community on evidence-based practice. We've had a great relationship with Dane County Human Services. It's provided for us sort of a real world model to create programs that can be replicated in other parts of the state. So that's what I'll talk about. And as I go through my presentation, I'm not going to talk so much about the research. I'm going to cite people. It'll be confidential. I'll just use first names. But the work we provide is outreach. We have our beacons of evidence-based practice, but then we have to turn that into reality into our communities. 

So that's what I'll be talking about. And, as I think about this transition from science to the work we do in the community, I sort of move into art. And I think the work we do is more artful. And the definition of art is the conscious use of skill, evidence-based practice, and creative imagination. So that's how we've kind of proceeded forward. So I'm going to share with you our thinking around this, and I have to tell you, behavioral support is complex. I've given this talk to a number of groups, and I had one mother come up to me after I gave the talk, and she said, Paul, I'm more confused now then when you started. [LAUGHTER] I just kind of don't know anyway around it. It's a complex issue. As you've heard from our previous speakers, it's complicated, and there's a lot we still don't know about autism. 

So, here's my way to confuse you today. We're going to talk about behavioral support in three areas. We're going to talk about attitude, then I'm going to talk about support teams, and then considerations. So, attitude, support teams, and considerations. So, we always start with attitude. When I get involved with teens, I make sure that people are thinking correctly around behavioral support. So attitude is important. The more connected we are with the situation and the life concern, the better things go. Attitude is especially important around positive behavioral support, and that's because we're caught in a contradiction. How many are parents here? You know the contradiction, right? You want to be high minded about your son or daughter, but aggression, destruction, self-injury, repeated behaviors, can kind of wear on your attitude. 

You have to be aware of that. One mom in this training once said to me, if you're going to do this work for any length of time, you have to get your head on straight. You have to know the good news and bad news. So the good news, let's start with that. In my mind it's a positive or it's a vital and interesting aspect of parenting, of educating, of partnering with families around behavioral support. And when we do it right, it's challenging. And when we do it right, we make a difference in terms of people's lives. So Bart is a young man that I worked with for a number of years. I guess throughout his age span. I saw him recently on State Street. 

He had some cool clothes on. He had a caregiver from CCLS, the agency supporting him, and I like that because years ago all hell was breaking loose with Bart. He was at Van Hise Elementary School. They were using inappropriate ways to support people with autism. He was on the wrong medication. There wasn't enough staffing for him, and life was difficult. He was on his way to an institution. So we gathered around Bart. We created a team. We started to pay attention to best practice ideas to turn his behaviors around. 

There was no magic to it, but Van Hise went better. Hamilton Middle School was even a better experience. West High was really quite nice, and because of all the work we did with Bart all those years, he's a happy kid. His family's reasonably happy with his life course, and Madison's a better place because he's out and about. So that's my pep talk. [LAUGHTER] Parenting is not easy. Parenting children with autism is quite a challenge, but if we embrace it, if we see this as our issue to deal with, we can make a difference. Now, if that's all I had to say about it, we wouldn't have to go any further around attitude. But you have to know when your attitude is adversely affected, not by your son or daughter but by these behaviors. And then you have to know how to turn that around. 

Hannah, Hannah is actually her name, a young woman with autism. Very nice family. Every one was on board with making life as good as they could for Hannah. And she has an older brother who really cared for his younger sister, and he agreed to babysit one night. He had an understanding of her needs. He had a friend over too. And as the evening progressed, Hannah's behaviors got more challenging. She finally was aggressive and destructive, and she embarrassed a teenage brother. You know how bad that can be. And so his attitude was high minded at the beginning of the evening. 

At the end of the evening, it was way down here. I came over to the house the next morning for a behavioral support meeting, and he's normally a shy young man. He walked right up to me and he said, you have to do something about my sister. [LAUGHTER] So we did what we could. I don't think we raised his attitude right away, but about the next week he was sort of back on track with being the good brother that he was. So I just bring this up at the very beginning of this talk that attitude is important. Know that contradiction and you're always working toward getting back to where you need to be. Positive behavioral support sort of lives within this positive attitude. I get around to a lot of agencies here in Dane County and around the state. Some of them sort of wallow in negative thinking around behaviors and they can never really get the ball rolling. 

Other agencies, other families, just deal with it. Power through it, get that attitude up to where it needs to be and are able to move forward. So, having said that, how's your attitude? [LAUGHTER] How many have been in the attitude basement? Behavioral support anonymous? [LAUGHTER] Okay. So, another idea to keep in mind around attitude is the idea people first language. So, today we're hearing about science. We're hearing about technical definitions of behaviors. When we translate all that into the real world, back into the community, we have to be careful to sort of tone that down a little bit. We have to be careful that the way we talk about people doesn't cause them to become the disability. So person first, right? Your sons or daughters have their unique ways, but in addition to that, they have their disability. So it's children with autism, not autistic children. 

And we're always careful to think about that and make sure that we present it carefully. So here's an example. I help write behavior plans for people, and the behavior plans that I use for family and school and providers in the community. So here's a way I probably would have written a behavior plan probably back in the '80s when we used more scientific thinking before this people first idea was out there. So, this is about a teenage named Jim. So, the old way I might have written his behavior plan would be something like this. Jim is a 16-year-old male with autistic spectrum disorder and associated obsessive compulsive features. He requires a strict regime of psychoactive medications as well as prescribed sensory integration regulatory activity, primarily vestibular, in order to maintain emotional equilibrium. Jim resides with his biological parents. Some of his preferred activities include video games and car rides. 

So, reading that, it's not too warm and fuzzy. You're not thinking about Jim as the child he is. So a better way to explain this, and I think equally as accurate, would be something like this. Jim is an active and engaging young man who lives with his loving family. His idea of a great Saturday is cruising the neighborhood on his bike in the morning, testing his skills on video games in the afternoon, and then riding in the car with Dad after supper. Jim is challenged with issues related to autism. He also, at times, feels the need to do the same thing over and over again. His family has found that certain sensory activities, like swinging, can help his channel his energy. Careful use of medication has also been helpful. So, same description but it brings out Jim, right? So think about that. 

Always hover around your attitude. Make sure that you're in that conflict but you're always working toward positivity. Okay, the second part of the equation and making things work in the community, having life be as good as possible for people with autism, is community support teams. People that would come to me, come to our program for positive behavioral support oftentimes have a number of people in their lives. There's a special education aid. There's a respite provider. There's other family members who are involved to work and provide support for the person. So oftentimes we treat the behaviors differently. Everyone's got a different notion. Whenever we get involved in a consultation, we ask who else is involved and when can we meet. 

So we try to create these community support teams. And there's a lot of benefit. One benefit is the sharing of ideas. A team that's working well together and open to listening to ideas is bringing in new information and sharing this common thinking around behaviors. The second reason is this continuity of care. There should be some sameness in the way that everyone's supporting the behaviors. Now, we're not going back in the '70s with strict behavior mod. That's not what we're looking for, but some sameness in the way that we're thinking about the behaviors. I've done a training with a woman named Nan Bryan who talks about brain development. And the term she came up with is a therapeutic web, and I kind of like that. 

Everywhere this individual is going within the support that they require, everyone's sort of thinking the same. So, when it works, it's great. Shane is a gentleman that I've supported for years from Schenk Elementary to Whitehorse Middle to La Follette then to adulthood, and his mother made sure there was a community support team working around him to make sure this therapeutic web was in place. She was always positive. She drew people in. The players changed, but there was this culture around Shane and it made a huge difference in terms of his support. I've also been involved in horrible teams. Horrific. No one's talking. Everyone's mad at everyone else, and lawyers start showing up in meetings. 

And then in those situations, who suffers? We all do, right? But especially the person we're providing support. So I go into these team meetings, here's some ideas to keep in mind. Team spirit. Team spirit is important. There's nothing like behaviors to have everyone get mad at everyone else. It's sort of a conduit for dissension. So go into it sort of steeling yourself for the effort, and make sure that you work together. Agree to disagree, bite your tongue, listen to the ideas of others, but stick together. Systems of communication are very important. It used to be the old notebook in the backpack, right? But now we have email. 

We have texting. We have better connections through telephones. We have smoke signals. [LAUGHTER] Crossing the environment so everyone's communicating about what's going on with the behavior. Communicative intent of behavior. I think this is an important one. What is going on? Why are these behaviors occurring? And sometimes, without the process of thinking through the communicative intent, you might think this individual was put on Earth to ruin your life. The behaviors become very difficult. So we look at that communicative intent, and I think Dr. Lainhart's description of the iceberg, I think was very good. Here's the behaviors. 

Here's what's going on with the behaviors. And I like to turn those into I messages. So, some I messages that might come out of an educated team working on communicative intent with people who are often largely non-expressive. They can't tell us what's going on, so we have to guess. So, screaming may mean I'm confused by what I hear. Aggression might mean the order of my day is changing too quickly, or I cannot use words to tell you well enough what I need. Running might mean I'm scared, and my world is not predictable. Withdrawal might mean I'm bright and no one knows it. Self-stimulation might mean I need to do this over and over again to help block out a confusing world. So that's what we're looking for. 

What are these behaviors communicating? And then we can start to move forward with the plan. The final part to this team is put something in writing. There should be a written behavior plan. Now, these shouldn't be the end-all, be-all. You shouldn't expect everything to come out of a behavior plan, but there should be a record. Now, what happens in our field is people come and go. Providers come and go. Teachers come and go. And sometimes a team comes in, they've done the best they can around behavioral support, then they all leave. The next team comes in and has to reinvent the behavioral wheel at the expense of the person. 

So put things in writing. I write a lot of behavior plans. I never do it alone. I work within the team. We work and process together. Dan K. is a gentleman that I'm working with now. He's got a great group. Parents are really on board with his support. He's got some teachers, providers at West High, everyone's got these great ideas. We talk about them in our meetings, and I try to characterize those in a behavior plan, and I try to keep it simple using everyday language, having it be a place where people can come together with this continuity of care and then this written history that will go with Dan to his next life experiences. 

So, having said that, how many feel like they're working with good teams right now? All right. Very good. How many are with some teams that could use a little tweaking? Okay. I could raise both hands. It's a daunting task to come together around behavioral support, but it's worth the energy and it creates this therapeutic web and continuity of care for the people we're supporting. Okay, so we have our attitude, we have our teams working together, now what do we do about it? Where do we put our energy? This is where it gets tricky. This is where I think I confused this mom. So, with considerations we want to start with the fact that there are no quick fixes. There's nothing that could come your way that will turn behaviors around quickly. And be aware of people that may say they have quick fixes. 

There's a lot out there around the field of autism, so be very careful with what you pick. Evidence-based is very important. Also, you have precious resources, funds, so make sure you're picking the approach that works best with your son or daughter. Change is slow. It's always a process. The graph never looks like this, right? It's more like this. It's rocky road, but when we have the support team in place with everyone working together, it starts to move in the right direction. So, change is slow. Be open-minded. Think broadly about what can make a difference for your son or daughter. 

Pull together your collective thinking around supporting people with autism. Put together what works. Pressure. A lot of what happens around behavioral issues is pressure that people feel. I had the privilege of working with Dr. Meg Little, psychiatrist for about 22 years. She would provide psychiatry within our outreach program, and she always talked about behavioral issues as pressure. So, the metaphor or the analogy we like to use is a red balloon. We all have one. Is there anyone here who has never gotten upset? So we know what it feels like, and the balloon is a good metaphor because the more pressure in the balloon, the bigger it gets. So imagine yourself supporting a person with autism but you're watching their behavior balloon and you're kind of paying attention to where the pressure is coming from. 

Finally, then, be creative within your teams. Again, it should be some semblance of evidence-based approach, but creative approaches can make a huge difference. Your team with this individual with the way you're pulling together support can make a difference. So, an example I like to use is with a gentleman named John, an adult who was supported through Community Work Services and REM, two of our very reputable programs here in Dane County. And John had autism. He also had intermittent explosive disorder. And that diagnosis was bandied about a bit, but he truly had this disorder. He could be in the community and staff are doing as well as they could with John and he would blow up, a window would be broken, the police would be called. So in one of our meetings we were thinking, hmm, how can we find out when his heart rate starts to increase and he's getting more upset? So there was a number of us who were, back then, doing performance athletics, and we decided one of the heart rate monitors with a beeper would work. So we spent $100 and bought this heart rate monitor, and he wore this cool watch, and we decided that we would hear his heart start racing more, and that would give us enough time to do our situational counseling or try to get John out of difficult areas. 

So it sounds great, right? Trained everyone in it. Didn't work. [LAUGHTER] Never worked. Never even came close to identifying what we wanted. But you know what it did do is it drew our team closer together, and John liked his watch. He thought it was pretty cool. [LAUGHTER] So, there you go on considerations. Keep that in mind. Now, as we get into the considerations, your team should have some basic understanding of how the disability affects the behavior. Whenever I do a consultation, I'm always looking for that. 

How does the disability affect the behavior? So, if it's Prader-Willi syndrome, then we're thinking about rigid thought process, tendency toward obesity, anger over food issues, fairness issues. If it's children with hyperactivity, then it's immediate feedback, a lot of foreshadowing, maybe a little more behavior modification. With children, adults with autism, then we always look at communication. What can we do to augment communication? How can we present the information in the best way to the individual? How can they express themselves? Sensory regulation. There's increasing evidence, in my mind in my work, that sensory regulation is extremely important. We'll talk a little bit more about that in a minute. Associated mental health issues. I think we heard from Dr. Lainhart that this is sort of the way it is. There are a number of issues that we have to relate to at the same time and make sure we're treating. The need for low stimulus routine lifestyles, and then what is the cognitive learning style of this particular individual. 

So, these are sort of the basics. Now, many treatments in autism can take you different ways, but kind of always go back to these: communication, sensory integration, mental health issues, need for routine structure, and cognition. Find an autism 101 description and make sure the team is reading that. And what I recommend here in the Waisman Center is we have a resource center. Kristin Gowan would answer the phone, you would tell her what you need, and she would help you find the resource that's the best fit for the people you support. So, there are some considerations on the considerations. Now let's talk about where can we go with this. How do we set up a lifestyle? And keep in mind we're always shooting for community integration. Community inclusion. That's our mission here within our University Center for Excellence. 

So, we always consider the environment. We look at environments and we do what we can to accommodate for some of these difficult behaviors. Many times people are institutionalized or they end up going to Mendota because the environment in the community, in school, or in the home cannot accommodate the behaviors. So, we always look at that first. Example: Jenny is a young woman with autism, and I was called out to work with the family to try to come up with a behavior plan. She was jumping out the second story window, she was running out the front door, she was making a mess out of her brother's room, and she was writing on the walls. So I took one look at Jenny and noted her behaviors and realized nothing was going to happen quickly, and this family needed relief. So, the next time we came out, we came with a toolbox. We worked with the hardware store, and we put screen on the second story window so she couldn't jump out. We put beepers on the front and back door so they knew if she left the house. 

Brother had a little Mickey Mouse lock on his door. And then we put washable paint on the walls. And the parents said of all the interventions, that was what got them started. There was a level playing field in which then they could start to work with Jenny's behaviors. John is an adult, and a big adult. He has autism, and he spent many months at Mendota Mental Health Center which was untherapeutic, and there was a considerable cost to the county levy here in Dane County. So we finally decided we needed to create a safer environment in the community. So there's a house on the west side that has -- on the windows, the doors are secure, he has some of these modifications, like the television, he can still watch television but it's kind of encased. So we kind of create this level playing field at home. Now, we tried to put a Martha Stewart spin to it so it looked nice. 

[LAUGHTER] But it was secure, and absolutely it's made a big difference for John. Within that context then, it's not always reactive planning for his support. And I saw him recently at a gathering over at our outreach on Nolan Avenue, and he looked great. He was sitting next to a caregiver who had a good therapeutic rapport with him, and I attribute a lot of that, in addition to some of these other approaches, to this environment that we created for John so he could stay in the community and receive the support that was important to him. So, pay attention to environments. Sensory regulation. I guess I can't say enough about this. We always look to make sure that people are regulating. And we all do that, right? I just spent a week cross-country skiing. I'm very regulated right now. 

So we all have our approaches. People with sensory overload, I think this becomes very important. So we look for sensory diet. We look to build in, in a preventive way, what people can do to keep their self as regulated as possible. So, little Jenny, she went to Toki Middle School. Have you ever been to Toki Middle School? It is a busy place. She had a free-standing tent, and she loved maps. So every hour, on the hour, she would go into the tent, look at her maps, and kind of lose herself in that world which helped her regulate, then she was able to move out into the community. Shane had his fiddlers. He always had something in his hands that he was fiddling with, and we saw that as being very productive. 

Now, he also had a squeeze box, squeeze machine. This goes back to Temple Grandin. So this was a machine that was pneumatic. He'd get in it, it would give him a good hug, and we all had to use it too before we were deputized to help Shane use it. [LAUGHTER] It felt pretty good. [LAUGHTER] So, I can't say enough about sensory regulation and sensory diet. Okay, another one that's oftentimes overlooked and that is relationships. Relationships are important for all of us, right? We know who to go to to get support. We know who to go to to get clarification and outlet for feelings. We're always looking for people to help us with our emotional needs through this rapport with other people. 

And it's kind of a misconception sometimes that we think people with autism don't need the same feel. People with autism absolutely need these therapeutic relationships along with everyone else. Dr. Mallick, in a venue similar to this a number of years ago, in her talk just kind of as an aside just said people with autism are often lonely, frightened people. Given their neurological issue. So, relationships are important. Now, here's the rub. Challenging behaviors can preclude good relationships. So, when people are aggressive, destructive, self-injurious, then sometimes that relationship is severed, and these are the people that need the relationships the most. So it kind of becomes an insidious kind of situation. So, we often need to reconnect and make sure we're adapting counseling therapy techniques to make sure people doing the direct care are providing that therapeutic approach. 

A number of years ago, I wrote an article for a newsletter about this very same speech, and I gave examples written kind of in the first person from a parent. So, these are kind of based on reality. Not reality, real situations. So here's one about a team that worked with a young man named Adam. So I'll read this as if it's coming from Dad. My son, Adam, has Down syndrome and autistic spectrum disorder. Last fall we went through a really bad period. He wouldn't sleep in the night and spent the entire day spinning objects. Adam always likes to spin, but now that was all he wanted to do. I was at my wits end. 

It was very hard for me to watch. We met with the school staff and others to try to figure out how to get Adam back on track. As we were talking, someone asked the entire group if the way that we were relating to Adam had been affected by his behaviors. It dawned on me that it had. I had not wrestled with Adam in the living room after supper for weeks. We always went on a father and son doughnut run on Saturday morning. I couldn't recall the last time that had happened. Our bedtime routine had become very rigid. So over the next few weeks, I made conscious efforts to reconnect with Adam, who is not easy and sometimes not so fun with all that spinning. Sometimes I had to set my watch and will myself to be positive with Adam for the next half hour despite the fact that I was not getting much back. 

Eventually, Adam worked out of his mood. We tried a lot of ideas at once, so I'm not sure what turned him around. Whether or not it was my efforts to reconnect that made the difference, it sure didn't hurt. So, keep that in mind. That's one of your questions. Look at the environment. Also look at relationships, making sure that people are connected, that they have this external control or locus of control and a connection with people. So, another consideration is behavior modification. So let me say this about behavior modification: sometimes it's not the right answer and sometimes it's contraindicated. It's contraindicated. 

Sometimes it creates a kind of confusion with people that really don't need this kind of contingency management. Before I came to the Waisman Center, I worked in a residential program for adults, a place called Orchard Hill here in town, and there was a woman in this program, her name was Linda, and she has autism and I had to, by law, come up with a behavior plan. So replacement behavior reinforcing that, setting limits, reinforcement schedules, and it was driving her crazy. It just wasn't what she needed in terms of sustaining her emotional control. She needed this low stimulus lifestyle. She needed a best way to communicate. She needed careful therapeutic relationships. So I learned carefully that you have to be careful with behavior mod. It's not your first consideration. It's always humanistic. 

And good behavior approaches, when they're used, organize the caregivers, they make sure we put an emphasis on the positive, and if there are limits, we are very careful that they're thoughtful and not a form of punishment. So, here's behavior mod in 30 seconds. How is the challenged behavior meeting a need? What behavior could work better? How do we teach the new behavior? How do we motivate change? And how do we use a neutral and safe response to challenging behaviors? So, if we look at this, I think this is the heart of what we would use for people with autism. I don't think there needs to be as much energy put on contingency management, but teaching new behaviors is important. And I'm a strong advocate of social stories. How many have heard of social stories? I think they're great. It's scripting and repeating new ways that people can interact with their life in very careful ways. Video modeling, how many have heard of that? I haven't done as much with that, but I'm a strong advocate of that as well. Kate McGinnity is one of our great autism consultants here in the state, and she's a strong advocate of video modeling. So that's where I would put most of my energy when it comes to a behavioral approach. 

Okay, if knowing nothing else about the person, then use relationship guidelines to move forward. And going back to Kate McGinnity, she was great at catching students doing well. There was a certain class that went through Bird School, and there were a number of very challenging students in that class. I did a pre and post. I supported that school before Kate was a primary teacher, then I supported that school after Kate got hold of that group. And she was absolutely fabulous at catching these students doing well, putting her passion at times when they were doing well and dispassion when they were not doing well. She was very good at reading stress triggers. And, in my handout, is there a list? Do I have a handout? [LAUGHTER] Oh, okay. Well. [LAUGHTER] Well, okay, if I had a handout... 

[LAUGHTER] There would be 20 stress triggers and then ways we provide support. So, a stress trigger is basic, like hunger, fatigue, thirst, illness, change in routine, discomfort, sensory overload. So, caregivers who are using a behavioral approach are a step ahead. Reactive behavioral approach is where people act out and we react. Proactive approach is when we know there are issues, we make a preemptive strike. We pay attention to stress triggers. We impact on the trigger before it affects the person. So for people with these kind of issues, that's where we put most of our energy. And if I had a handout, it would be right there. [LAUGHTER] But we can make sure that those can be available to you. 

Okay, I'm going to leave enough time for questions. Just three more areas. Expectations. Here's a tricky one. It's hard to know what to expect from another person. It's hard to know what to expect from your neuro typical children. It's really hard to know what to expect from a person with autism. And we have to be careful not to over expect or under expect. So it takes a lot of work to get it right. So, Lisa is a woman with autism. 

Great mother, who is really motivated to bring the best out in Lisa. Lisa had, by our best guess, an atypical mood disorder. So when life was good, she could learn and she could engage, but then she would get into these owly, difficult moods where she would withdraw. And Mother decided we're going to push this. We're going to push the envelope even at those times, and that pushing the envelope around expectations created a lot of behavioral issues. So we finally agreed that we had to have a kind of a cycle to our expectations. When she's doing well, we made hay while the sun shined, right? We worked well, but when she was not doing well, we know when and how to lower expectations. So pay attention to that. Be realistic, reduce the pressure on the individual and yourself by modifying expectations. Pay attention to the amount of support people need. 

Going back to my pre-Waisman Center days, I worked at this Orchard Hill. There was a woman named Donna, and Donna was having trouble in the morning. So the more trouble she had, the more staff we added. The more staff she added, the more she screamed and got angry. So someone in the team meeting said, well, maybe we should change things around and use less support. Well, I let that ride a little bit, but then I came back to the next meeting, being the behavioral consultant, I said maybe we should back off and use less support. [LAUGHTER] I owned up to it. It was her idea, and it made a huge difference. Donna did very well in the morning without too much support. So pay attention to how much direct support that people need. 

Okay, so, sometimes we're doing it right. It's all working but behavioral support is stressful. Anyone ever notice that? [LAUGHTER] Okay. So, there has to be a way to make sure that direct providers are dealing with their stress. It's an occupational hazard. Any life endeavor there's an occupational hazard. This is ours. We can quell the behavioral balloon of the person we're supporting. We leave and then our balloon gets bigger, right? So, shared care giving is very important. Maintaining personal emotional equilibrium. 

So, separating home from work, care giving work, supporting one another, realistic expectations, time off, humor, I can't say enough about humor, diversions, avocations, then exercise, relaxation, and spirituality. So I just wanted to read, I'm running short on time, I wanted to read another snippet from a situation with a family. And this is around a young man named Stevie. So this is from the mother's perspective. I have two boys and love them both. I have a great husband and a perfect country home. My oldest, Stevie, has Down syndrome and autistic spectrum disorder. We've spent a lot of time educating ourselves, teaming with school and other professionals to sustain what I hope is a positive focus for Stevie and his brother. Being with Stevie is a lot of work. He demands constant attention. 

If he does not need me, I have to wonder why. With little provocation, tantrums can emerge which are punctuated by aggression and self-injury. My stress level has been so high at times that I struggle to keep from getting depressed and find it difficult to be a good parent, not to mention spouse, friend, or coworker. The only way we make it day to day is with a lot of help. Stevie is in school all day and goes to an after-school program until 5:00. Every other weekend on Saturday, a respite provider fills up Stevie's time with plenty of action. My husband and I take turns with a pretty equitable childcare plan. He does the lion's share in the evening, and I take the mornings. This spring, our respite provider is taking Stevie for a week while we go to Florida with his brother. We often struggle with guilt about having to have so many people in Stevie's life. 

I feel bad that he will not be with us in Florida. It also takes a tremendous amount of work to set all of this respite in motion. Sometimes I feel like our home is Grand Central Station, but that is our reality and that is what we need to balance the needs of Stevie and our family. So, caregiver, self-preservation, family members. Of all the programs here in Dane County that we provide for families, I think the most important ones come from the Family Support and Resource Center and United Cerebral Palsy with providing respite for families. Okay, a couple more areas. Behaviors can sometimes take kind of a dangerous quality to them. Aggression where people are getting hurt, destruction where valuable objects are being broken, and then some very difficult to watch self-injury. So, sometimes we have to have a plan for that. I provide a lot of seminars on positive behavioral support. 

But the one I could probably do 24/7 is something called managing threatening confrontations, and that's where we sit down as a group and we look at these difficult behavioral issues. So what does behavioral escalation look like? When do we talk? When do we not talk? How do we work as a team? How can we be passionate when people are doing well? How can we be dispassionate or neutral when behaviors are occurring? And then actually practice passive self-protection. So we plan for the best but we also prepare in a realistic way for dealing with difficult life situations. So, sometimes that has to be in place. Okay, finally, and I shouldn't say finally. All of these approaches I'm talking about can be reordered depending on the person. Attitude, teams working together, looking at a variety of considerations, psychiatric medications can make a difference. I'm an old-timer now. I've been around in this field since 1975, and psychiatric medications have moved in the right direction. There is much more, I think, that can be provided with a careful judicious use of psychiatric medications. 

Now, Dr. Lainhart said that you can't expect everything from meds, but sometimes they can put us on the right track. So, find psychiatrists and physicians that are sensitive to the needs of people with autism. You become a good reporter. You have to represent the needs. Be objective. Be prepared to express the issues that are occurring so this doc, sometimes within 15 minutes to a half an hour, can make the most accurate decision about the med that can make a difference. And then you learn about the meds. You learn about the effects and side effects. You don't preempt the doctor's decision, but you're there. You're giving good information back to the primary doctor. 

So, last year I supported a young man named Coen. A really neat kid in McFarland, great family, and Coen could tantrum. Putting a positive spin on things, he was the best tantrumer I've ever seen. [LAUGHTER] He could scream. He could run. It would last an hour. It was dramatic. We tried a behavioral approach and said it wasn't working. We had to use more restrictive measures. So, finally, he was admitted to Meriter to a psychiatric unit, and the doctors there paid attention to him and his behaviors, and they prescribed some medications. 

And those medications have been tweaked and changed here and there, but they provided us a baseline, a control that we started to build the other approaches. So, the right medication with a psychiatrist given the right information, and then used in conjunction with other approaches. Okay, so that's my presentation. One minute left. That's what I have. It's complicated, right? I hope I haven't confused you more. Keep your attitude up, work as a team, and then be kind of broad thinking around these variety of considerations. So, questions? [APPLAUSE]