Treatment Overview Catherine Lord, PhD Director of the Center for Autism and the Developing Brain: Parents of children with autism are faced with a huge task in trying to figure out what’s best for their child. Who should get what treatment when? How do we know what is enough? When do we know what to change? Um, how do we pull in different ingredients? Because we’ve got a host of very good techniques for working with children and adults with ASD. Dr. Catherine Lord: But we don’t really have systematic evidence for what we should do with whom. Geri Dawson, PhD Chief Science Officer Autism Speaks: There have been many different models of intervention, um, over the last several years. And one of those models is called Applied Behavior Analysis. Visual: Applied Behavior Analysis Dr. Geri Dawson: And this involves breaking down, uh, tasks into minor steps, little steps and then teaching the child how to learn those behaviors, whether it’s eye contact, social interaction, in a very systematic way, rewarding them for doing so. Janelle ABA Therapist: Oh! Where’s your feet? Janelle with Gabriel: Whee! Go like this: bum, bum, bum, bum. Yeah. Here goes ready, set, . . go! Go! Oh, no. Ron Leaf, PhD Director Autism Partnership: And when you look at ABA, what does that mean? It means high expectations. I think it means taking skills, breaking down small little parts so that children can understand those skills. Janelle with Gabriel: Alright. Look, we’re going to put on our socks. Then we can play more, Ok? Good job. You’re doing so good. Janelle with Gabriel and Aide: Ok, Ok. Try again. Ba, ba, ba, ba. Try again; try again. Ba, ba, ba, ba, ba, ba, ba, ba, ba. That’s Ok. See. Oh, you got it! Yeah! Yeah! Good job! Good job! Geri Dawson: At the other end of the continuum we had interventions that were very much focused on the relationship between the child and the therapist, . . . Visual: DIR Floortime Developmental Individual Difference Relationship-based Model Dr. Geri Dawson: . . . An arrangement such as Floortime, where you get on the floor, and you’re really following the child’s lead and you’re focusing on forming that emotional connection. Visual: Brady Katie DIR Floortime Therapist: When I first met him, Brady was almost non-verbal. He was very interested in the people around him, but when left on his own, he would choose to play individually. Katie with Brady: Hey, here comes your kite! Katie: My initial goal with working with Brady was to really find what interests him. Dr. Ricki Robinson Clinical Professor of Pediatrics USC Keck School of Medicine: And so it’s an engagement that we have with the children where we are helping them become internally motivated so that they want to go out there and interact and do certain things. Katie with Brady and Mother: Brady. On your mark, get set . . . yeah, you hear what I hear? Good night. Dr. Ricki Robinson: So you can imagine when an approach is so broad-based that it’s a little bit harder to study than a program that has a very specific curriculum where you can tease apart different, different elements of that program. Visual: TEACCH Autism Program Susan Boswell TEACCH Trainer: I mean I really think of TEACCH as one of the only ones that has developed a theoretical model here, a systematic approach that isn’t about one specific therapy. Will Linda Varblow with Will: O.K., that is finished. Susan Boswell: He matches each one of the pictures and then brings the activity over to the table so he can be more independent. Linda Varblow with Will: Who’s that? Who is that? Arnie, yeah. Susan Boswell: Structure is the vehicle that delivers the curriculum. Linda Varblow with Will: Check your schedule. See where you’re going to go. Susan Boswell: It’s a whole approach to how you teach anything that is designed around the strengths of autism. Visual: Early Start Denver Model Dr. Geri Dawson: What you see in the Early Start Denver Model is the rigor of ABA in the teaching practices, but that teaching is conducted in the context of a relationship and a play-based, uh, therapy model. Visual: Andrew Sally Rogers, PhD MIND Institute: Night, night, kitty. Night, night, kitty. Time to go to sleep. Mmmh. You going to give him a kiss goodnight? Dr. Geri Dawson: Dr. Rogers and I felt that both of these had value, that there was a science behind the teaching that goes on with ABA that’s very rigorous, that’s been shown to be effective. And yet we also know that the emotional and social relationship is so important. Dr. Sally Rogers with Andrew: Could that be a bathtub? Could that be a bathtub? Yeah. Two dirty animals. Andrew: Two dirty animals! Dr. Sally Rogers: Yeah. Now what do we do? Catherine Lord Director of the Center for Autism: In the last few years I’ve been involved in a project with Early Start Denver Model, which very much emphasizes choices. Dr. Sally Rogers with Andrew: Do you want crayons or markers? Andrew: This, this is markers. Dr. Sally Rogers: Yeah, those are markers. Andrew: And this one’s crayons. Sally Rogers: And these are crayons. Dr. Catherine Lord: And I’ve been amazed at how much it increases a child’s communication just to have multiple, um, presses for choices along the way. There are virtually no comparative studies that directly contrast ABA to TEACCH to DIR to Early Start Denver Model. One way to do that may be to do short-term trials, like Connie Kasari does, where you do an intervention for twelve weeks or sixteen weeks with a focused ingredient and see if that makes a difference. Visual: Joint Attention Symbolic Play Engagement Regulation Connie Kasari, PhD Center for Autism Research & Treatment, UCLA: I think some of the biggest advancements are now in really teasing apart some of the active ingredients of interventions. We’ve known for a long time that children benefit from structure. They benefit from ABA, but I think we’re getting much better at teasing apart the, you know, what is it about various aspects of the intervention that matter to particular children? Charlotte: Go square. Visual: Parker Charlotte JASPER Therapist: When Parker started he was using one to two words, and so I kept all my language at one to two words. As we’ve gone through intervention, he’s now using three to four words and so I will use three to four words. Charlotte with Parker: More squares on! Dr. Connie Kasari: Teaching children joint-attention resulted in better language, but so did teaching children play skills, and we were really focused on symbolic play skills, imaginative play because that’s the harder thing for the children to learn. So that was also related to language outcome. Florence Clark, PhD Chair, USC Division of Occupational Science & Occupational Therapy: Occupational Therapists have always been some of the main providers for children with various kinds of developmental disabilities. Visual: Rowan Susan Raseli, Speech & Language Pathologist: A crab. Oh, my goodness! Rowan: It’s coming. I’m coming. Janet Gunter, Occupational Therapist: I see somebody coming. Who could it be? Dr. Florence Clark: Sensory Integration Therapy is an intervention approach, and it became one among many interventions that an occupational therapist might provide. Janet Gunter: And this is our pretend airplane, so climb aboard. Rowan: I don’t want to play it anymore. Janet Gunter: Well, you said you were going to get a hundred animals. Dr. Florence Clark: Some of the comprehensive educational programs like TEACCH and even the Denver Model enfold sensory approaches that are very informed by what work that occupational therapists have been doing. In other settings there is an interdisciplinary team, and a lot of the clinics have speech pathology; they have an ABA specialist; they have, uh, occupational therapists. And in those settings the attempt is to put together the best customized plan for each child based on that child’s needs. Susan Raseli: Rowan, can you get the animals? Robert Hendren, MD Child Adolescent Psychiatrist: All children really should have a good, thorough medical evaluation. Too often children with autism can’t tell us symptoms that help us identify other medical difficulties. And while there might be some controversy about how much of those medical difficulties have to do with the autism, clearly having medical difficulties makes autism worse. Dr. Robert Hendren: As we’re beginning to think about nutritional kinds of interventions or what have sometimes been called biomedical interventions to help the body withstand whatever environmental stressors are coming its way and pushing it towards a disorder, not necessarily using big-gun medications, some of which we don’t know enough about to know, ‘Are they fully effective?’ but we know enough about to know, ‘Are they safe?’ By weighing the risks and the benefits, by talking to families and determining their risk/benefit ratio as well, parents and doctors together can help make a good decision about when to use medications or not. Temple Grandin Author “Thinking in Pictures” : I mean one of the most important things the families need to know is, uh, well, first of all, the importance of early intervention. You’ve got to work with them, you know, a lot of hours, twenty or thirty hours a week of one-to-one TREATMENT OVERVIEW interaction and engagement with an effective teacher. And I can ask, ‘What’s an effective teacher?’ An effective teacher is one that gets more speech, gets more eye contact, better turn taking, uh, better engagement with other kids. Dr. Catherine Lord: If the child is sitting in a classroom and not paying any attention or just miserable, being in that classroom does no good. Um, if they have a therapist who has a great plan but can’t get the child to sit still or the child is spending half their time whining to get out of the room, that’s not worthwhile. So the first step is how does the child feel about it. The second step, though, is, ‘Do you see changes in other situations?’ Because I can get a child to look great with me, but if the child doesn’t continue to then look great with other people, in the long run that’s not what I’m going to choose. Dr. Ricki Robinson: I think the best approach is to not go to one program or another program, but to view it more that what we have here is we have a library shelf full of treatment approaches and that the key is we pull the right volume off the shelf at the right time for the child. And then if the child is no longer making progress, we put it back on the shelf. Dr. Geri Dawson: Every intervention should be, um, defining very specific goals for your child. And those goals and your, the achievement of them to be measured daily, hourly. If your child isn’t making progress, that’s a good sign that maybe you need to be looking for a different therapist or a different, uh, intervention type. Dr. Temple Grandin: You get that effective teacher -- ABA starts to look like Floortime; Floortime starts to look like ABA, and a good teacher’s kind of more effective doing those things and getting that kid engaged. Dr. Catherine Lord: And I think probably in the end, what people do is they look at their communities: ‘What’s available in the community?’ And then again my bias would be, ‘Who is really good?’ The characteristics of the interventionist matter just as much as the philosophy behind it. So looking at what is there already and actually seeing, ‘What do those people do?’ And in autism you get what you see.