Autism Now: Julie Fisher Extended Interview
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ROBERT MACNEIL: Why was a charter school needed in New York?
JULIE FISHER: It’s a charter school specifically for kids with autism. It came about from two brilliant moms who were actually just looking to start a really high-quality school for children with autism — something that they had a hard time finding for their own sons in New York City. And they happened upon the world of charter schools and realized that it was a very good match for a lot of reasons.
I think the charter-school movement has pushed the envelope in terms of thinking outside the box in education, looking at a real innovative approach to education. And I think that’s what you see when you look at autism education is the need for really looking at the individual. Tailoring things in a way that sort of a general curriculum or– a sort of cookie-cutter approach wouldn’t allow for.
ROBERT MACNEIL: What can you achieve that other schools for children with autism can’t or don’t?
JULIE FISHER: Well, we are fortunate in that we have a great ratio in almost every classroom. We have the ability to instruct pretty much one-to-one. So we have a lot of staff here for our students that allows us to do the high level of individualizing of everything that we do, which I think is so critical when you’re educating kids with autism, because they’re so different from one another. You really have to construct things on an individual level.
But the other thing that’s great in our particular situation and given the climate around charter schools in New York City is that we’re housed in a public school. We’re housed in a public school in East Harlem. As a result of that, we have access to and are serving a broader community. Many of the children who attend here come from the local neighborhood. A lot of kids that come to school here are kids that wouldn’t typically be able to access a private school program or this level of education.
And we also being housed in a public school have done a lot of interesting kind of cross-programming, where we have and currently do in some cases put some of our kids into the regular education classrooms that are right around us. We also pull children from the public school and bring them into our hallways to teach them about autism and expose them to our kids, which has made for a really neat kind of awareness building within the school and the community.
ROBERT MACNEIL: Entry is by lottery.
JULIE FISHER: It is, yes.
ROBERT MACNEIL: How strictly enforced?
JULIE FISHER: Very strictly. I mean, that was one of the absolutes within the charter school world. That the intake process has to be random and non-discriminatory. And that was actually one of the hardest hurdles for us, because our lottery process is a little bit different than most charter schools. Most charter schools, names go into a bucket and they’re pulled out. For us, just because of the nature of the autism spectrum, how distinctly different kids can be from one another.
The founders felt that it was important to create a lottery that insured that there was distribution across the spectrum. So, we have a system where when applications come in, they are sorted by an outside consultant, by the committee on special education, into cohorts that have been defined severe, moderate-severe, and moderate. And then lotteries are actually conducted from each of those buckets.
ROBERT MACNEIL: If this was paid for by a person or by a family, it would cost what to go to this school?
JULIE FISHER: It would cost upwards of $80,000 a year.
ROBERT MACNEIL: But your school qualifies for public funding.
JULIE FISHER: Yes.
ROBERT MACNEIL: Under the — education for individuals with disabilities.
JULIE FISHER: Yeah, none of the families pay anything for children to attend here.
ROBERT MACNEIL: Right. How do you measure the — the cost effectiveness of that compared with the broader range of public schools?
JULIE FISHER: That’s an excellent question. It’s a hard one to kind of answer in a broad and generalized way. Even just the issue of measuring effectiveness, forget about cost effectiveness, can be challenging. And I think, you know, we go back to looking at each individual, given that what we’re doing for each of them is so uniquely different in different cases.
And looking at sort of the protocols we have in place for our own accountability, which there are a lot. So, on an individual basis we’re looking at student achievement data– progress across everything that they’re working on. As well as our own mechanisms for accountability in terms of parent participation, all the charter objectives that we have to adhere to. So yeah, that’s a tough question to answer.
ROBERT MACNEIL: In terms of the difference in individual lives that you can make, give us a couple of examples that you think this school has made a significant difference.
JULIE FISHER: I can think of many. A couple that are sort of different in nature, just because of who the kids are, but we’ve had several kids who have gotten to the point where they’ve graduated from our program and moved to less restrictive settings, because we’ve worked so hard on decreasing some of the problem behavior that they may have come in with and increasing behavior that’s allowed them to learn in a group and interact socially with peers. So that’s sort of a huge, obvious difference that everyone would look at and say, “Wow.”
But the other little differences that go on every single day here that are amazing for me to watch– may be much sort of less grand in scale. I’m thinking of one little guy who came in with a lot of challenges and continues to have a lot of challenges to this day. He’s non-verbal. We’ve taught him to use an augmentative communication device, an iTouch, actually, which has voice output capability.
But he has a lot of challenging behavior. When he first entered the program, up until he was about nine years old, his caretaker was having to walk with him on a leash, harness, when she was in the community, because he would suddenly dart and take off to whatever he thought was interesting, whether it was in the street or in a parking lot.
And we worked diligently and it took a lot of time to get him to learn to stay with an adult, first in our hallways, then in the play yard that’s enclosed, then around the block. We brought the caretaker in. She actually spent a number of days and weeks here with us, doing those same steps. We then generalized back to his neighborhood and now she’s able to take him without any kind of harness. You know what? He still doesn’t talk. He still will be with us for a long time. He still will probably require high levels of support for the rest of his life, but I think little things like that are huge, in terms of the difference it makes in his life.
ROBERT MACNEIL: When you treat — the treatment for autism is education — you agree with that?
JULIE FISHER: Yeah.
ROBERT MACNEIL: Do you treat the condition? If you treat a disease, you treat the disease. Do you treat the condition or do you treat the child?
JULIE FISHER: I think autism, whatever it is or wherever it comes from, creates certain deficits and certain strengths. And I think that what we’re looking at is how that manifests in every child and every individual that’s here. And treating based on where we see deficits lie– enhancing strengths when we see that there are strengths or natural abilities that we can cultivate and capitalize on. So, I guess kind of how the disorder affects the individual, that’s always looking at the individual.
ROBERT MACNEIL: You employ heavily the ABA or applied behavioral analysis. Would you describe how you use that? Because you — am I right in thinking that you use ABA about as intensively as any school for children with autism?
JULIE FISHER: Yeah. I mean, the thing with applied behavior analysis in my mind, and I would definitely consider myself a behavior analyst, it’s a philosophy, a methodology as much as anything. It’s a way of seeing how we all learn and how our behavior is shaped by other people and other things. So, I’m a behavior analyst in my thinking. And that just means that the way I look at everything is through that lens, not just my kids here during the day, but everything about kind of life and the way people learn and absorb information.
ROBERT MACNEIL: Is this the most ABA school for children with autism there is?
JULIE FISHER: Yeah. And again, I think it’s a philosophy more than anything, in my mind. It’s a way of looking at how people in general learn, not just children with autism. How our behavior is shaped by other people and by things that we encounter everyday. And what makes– you know, people have an idea of what A.B.A. looks like, that it should look like something that would be able to tell you that it’s applied behavior analysis. And I think that while they’re good teaching practices, so much of what makes ABA what it is is all of the behind the scenes work that goes on in terms of, you know, look at the data that are collected. And thinking about it and analyzing it. And making good decisions based on the information that we’ve collected.
ROBERT MACNEIL: Why don’t children with autism learn the social skills and the behaviors that are considered “normal,” if that’s the word, in society. Why don’t they learn those? The way that other children do?
JULIE FISHER: Yeah. I think there are a lot of different ideas about why. And I think there probably are a lot of different reasons why for different children. You know, I think some of it has to do with what kind of functions as reinforcers for them and what they attend to. You know, what we see with very young, young children, even typically developing children is they are riveted to the people around them. Especially their mom and dad. They’re watching and absorbing like sponges.
You see them imitating and trying to do what they see their mom and dad doing. Every little toddler you see these days wants the cell phone, because they see how valuable that device is to their parents. For our kids, you can see typically from a young age that they’re not attending in that same way. That they’re not, for whatever reason, captivated the way typical kids seem to be.
So that says something about what they’re naturally drawn to, potentially. It also is limiting what they’re taking in. So, they’re not learning and absorbing at the intense rate that typical kids are. And I think there are sort of attentional issues, too, sometimes with some of our kids. Where they may have fleeting attention to certain things, but not the kind of sustained attention that’s required to learn all the sort of social skills and social nuances that are required.
ROBERT MACNEIL: Give us an example … one of the things you teach here is the perspective taking. Use that as an example of the deficits that you try and replace here. What is perspective taking?
JULIE FISHER: So, I mean it is exactly what it sounds like, which is being able to kind of step into another person’s shoes, if you will. And think as though you’re in their head for a moment. We do that all the time without even thinking. And it’s actually a really pivotal component of all conversation. We’re sort of watching each other, listening to each other, and doing quick jumps back and forth — based on what we know about the person we’re communicating with. Making guesses about what they’re thinking and how they’re reacting to what we’re saying.
It seems — we do it so naturally that you don’t even think about it. When you start to break it down, you realize it’s an amazing dance that we’re able to do. What we see with our kids is that’s very much lacking, even at a basic level. So that if, for example, a student may come to me and start talking to me about something, as though I was part of that experience, when I actually wasn’t.
And there doesn’t seem to be an understanding that you have to be aware of your listener when you’re talking to someone. And think through what you need to say based on who they are, where they have been, what their knowledge of you is. So if I were telling you about something that I did this morning, knowing that you weren’t here this morning, I would need to give you more background information to help you understand that. Our kids struggle a lot with those kinds of things.
ROBERT MACNEIL: Let’s talk about Ralphie. Describe Ralphy’s autism as you see it.
JULIE FISHER: I think Ralphie would fall on the more sophisticated end of the autism spectrum. He is charming, first of all. He is — very smart. Particularly around concrete, more concrete black and white kinds of things. So, concrete mathematical concepts. Things like that. He’s very good at. He has some real passions. Many of which can border on maybe seeming a little odd to particularly typically developing kids that would be his age. So, he is very fascinated with subway trains, and can talk on and on about them. I think his biggest challenges lie in the area of more sophisticated language understanding, especially the sort of pragmatics around higher-level language concepts, but all that’s unsaid in communication. That he has a very hard time even attending to, much less interpreting. And then just social interactions are very challenging for him.
ROBERT MACNEIL: Like what?
JULIE FISHER: Understanding how to sustain an appropriate conversation. And by appropriate I mean really being able to check in with your listener and see when something you’re saying is making that person uncomfortable or when they’re bored of the topic. Being able to pick up on shifts in conversation, so that you can stay with what’s being discussed. Even joining appropriately. Knowing how to sort of navigate when you can add your comment in order to join in on something that’s going on already. Those are very, very difficult for him.
ROBERT MACNEIL: He speaks so well and so fluently. An outsider, a person meeting him might say, “Why does he need to be here?”
JULIE FISHER: Yeah.
ROBERT MACNEIL: Why does he?
JULIE FISHER: I think that we’ve created structures for him, very clear expectations that have been reviewed and reinforced over and over again. And he’s very aware of those expectations and has been able to rise to them over time. So, I think that part of the reason that he looks — and this isn’t to minimize his strengths, because he certainly has a lot of them — but part of the reason he looks the way he does is because he’s in this structure that brings with it expectations and rules that are clear and very consistent.
ROBERT MACNEIL: Give me an example of a rule — of an expectation that he’s met that he didn’t meet before.
JULIE FISHER: So, he has learned that he cannot engage in dialogue around certain topics that he tends to get very caught up in and very over-excited by. He knows that those topics are off limits for major portions of the day.
ROBERT MACNEIL: Off limits because they’re somehow improper or they’re just
JULIE FISHER: Yeah. He has a difficult time–
ROBERT MACNEIL: Tedious for other people to listen to.
JULIE FISHER: Yeah. More that, I would say. And he knows that he needs to complete certain work tasks and other things quietly. That’s a real challenge for him. Outside of this environment, he is pretty much a nonstop narrator of every event that goes on, whether people are there to listen to it or not.
So, here he knows that, you know, during certain lessons, he has to wait his turn until he can speak. He has to raise his hand. He also is learning even things as subtle as– one of the things that all of the kids in that classroom are working on that we suddenly realized is pretty stigmatizing if you’re out there in the community is, keeping your mouth closed for just when you’re not using it, keeping your mouth closed.
Particularly around lunch time. We realized that that was something we hadn’t focused on teaching kids at all was to chew with their mouth closed. If you’re not chewing with your mouth closed, it looks really odd — most of the time. So, even little subtle things like that, we’re working on to help kids be able to be in the community without being stigmatized in any way. So, outside of right now where those rules are in place, you get less adherence on his part. And I think you’ll see that he looks different.
ROBERT MACNEIL: You just got past your five-year evaluation as a charter school. Was it challenging? Were — were you asked hard questions about — about what you’re doing?
JULIE FISHER: Every year, we are under a microscope as a charter school. All charter schools are, in terms of reporting requirements. I mean, the charter is basically a contract that we have with, in our case, both city and state authorizers. Every year, we have to meet certain objectives and there’s an annual report that’s given and typically a site visit that comes with that every year.
Renewal, which was this end of this five-year period was — a little bit more intense of a process. And we actually rewrote certain aspects of the charter, so we were only able to serve students up to 14. The last charter period now we’ve been granted the ability to serve up to 19. But it went well, thankfully.
ROBERT MACNEIL: I don’t know what more to ask. Tell me something. In Ralphy’s deficits.
JULIE FISHER: Yeah, I mentioned the language and issues on the social front. He also has certain sensitivities. One of them, at this point, being a real sort of anxiety reaction to automatic flush toilets. Anything automatic, actually. Any automatic sink or soap dispensers or things like that. Which seems like a little thing, but it actually really limits his ability to be in the community.
His mom, at this point, has to still take him in the bathroom with her. And while he’s young, he’s still getting to be past the point where it’s okay to bring a boy into the the women’s room. So, there are a lot of little pockets of things to be worked on with him. And I think that this setting is the one that makes the most sense for him, at this point.
ROBERT MACNEIL: What kind of a career can you imagine him having?
JULIE FISHER: Like I said, he’s remarkably smart. And I think will be able to do, you know, certainly things that involve computer skills. He’s very savvy with technology and interested in it, seemingly. You know, the hardest parts of a job that we’re realizing more and more as we learn more about kids getting older are all the things around the actual job. How you navigate the work environment. How you engage in whatever social interactions you need to engage in. How you manage the inevitable sudden changes or unpredictable things that may arise. Those are the things we’re gonna have to work on a little bit harder with him.
ROBERT MACNEIL: You’ve been involved — with autism for a long time now. Where do you think we are in understanding it? I’m not talking about causes, because that’s a separate subject. But where do you think we’ve got to in understanding autism?
JULIE FISHER: I think we’re — we keep getting better and better. And it never seems fast enough. But I mean, I remember when I first started in the field, and some of the language skills that we were working on that I remember feeling like, “Wow, this is really cutting edge that we’re working on this language skill.” At this point, I mean that was nothing compared to what we’re doing now. I think we’re getting better at programming around really subtle behaviors.
Like, you know, eye contact responses. Nonverbal communication. Perspective taking and things like that. You know, I think the area that we need to keep pushing in is doing more with less, is being able to provide this high-quality, intensive, individualized approach in not necessarily one to one at every turn. Being able to keep kids engaged and learning, even if they’re in less than a one-to-one ratio.
ROBERT MACNEIL: Why would you abandon that if one-to-one is the kind of gold standard of–
JULIE FISHER: Yeah. And I mean it’s not about abandoning. I think there will always be certain students who present with such a high level of need and challenge that they really primarily require one-to-one. But I don’t think all do. And I think there are — the reality is, given the number of kids with autism out there, we couldn’t offer one to one, realistically, to every single child.
There’s ultimately a limited pool of resources, whether it’s money or expertise — and I think the onus is on us as behavior analysts to take what we’re doing and look at how we can do it with less. And I think we’re starting to do that more, as well. And I’m excited by some of what we’ve tried here at the school. Even with kids who you would say, “those kids really need one-to-one support.” We’ve been able to do some really interesting small group instruction — maybe at a basic level for some of them, but — what’s been great is we’ve seen them respond in really interesting ways to it. And I think that’s certainly one of the paths for the future for — for all of us to be working on.
ROBERT MACNEIL: Are you saying behavior analysis needs to analyze itself?
JULIE FISHER: It absolutely does. It continues to, at all times. But yes.
ROBERT MACNEIL: Okay. Thank you.
That surprised me a little bit, too, because one thinks of it– at least, my limited knowledge, I do, as something very practical.
Besides ABA as a philosophy, what about the importance of ABA as a concrete– a path of concrete steps towards improving behaviors that mark off the child.
JULIE FISHER: Well, when I said “philosophy,” it’s a set of principles that underlie human behavior. And we’re applying those principles to every individual in the way that we’re looking at them and then in the way that we’re making decisions about what to be teaching them. I think people like to look at everything in terms of, “Okay, well, you have step A, B, and C.” And that’s the path you follow.
I don’t think effectively teaching kids is like that. It’s very much– that analysis piece really breaking down every individual child’s performance on an every individual thing you’re looking at. And making decisions based on the information that you’re collecting. I mean, there are certain principles. If I see that a student isn’t performing a certain task, I’m gonna look critically at why that is. And I’m gonna use strategies like, “Okay, well, let’s look at reinforcement that’s being offered for correctly performing this task. Let’s look at prompting strategies. How I’m showing a child to perform the task.”
Do they do better with manual guidance to complete something? Do they do better with a textual symbol that would cue them to do certain things? As I’m collecting information about children, I’m learning about their rate of acquisition, the kinds of things they tend to be stronger with or not as strong with. And I’m shaping my intervention based on them, really. So, there are certain tools that ABA affords, but it’s really this analysis of the individual that’s determining how I’m progressing.
ROBERT MACNEIL: You said it’s– are you saying that these are things that the quote “normal” unquote child is taught by the same methods, but just taught naturally. A bit– a bit of reward, reinforcement– negative reactions to behavior that is considered negative?
JULIE FISHER: Yeah, I mean, as a behavior analyst, yes. That would be my-
ROBERT MACNEIL: Let’s take– let’s take a concrete example of a form of behavior that you consider it beneficial to moderate. Because that child will do better– out in society if that behavior is moderated. Describe such a behavior and how through A.B.A. you moderate it.
JULIE FISHER: So, with a child who tends to dart, in the community, let’s say. We would first of all look at what’s sort of leading to that behavior. We would do probably a preference assessment to try and get a bunch of things that we know this– individual or child would be very motivated by. So, if running across the street to the store is high on the preference list, we want to find things that are higher on the preference list that we can give to them more readily so that allocating my responding to running across the street is gonna be less compelling if I know I have this thing right here.
And then we use that very systematically reinforcing, kind of baby steps toward that bigger goal of staying with an adult as opposed to darting in a tempting situation. And we might use a visual system that cues the expectation of staying next to an adult, along with offering reinforcement for very short intervals of staying next to an adult during walks.
ROBERT MACNEIL: Like what kind of reinforcement? So, if the child’s darting across the street, because there’s a candy store there, you would give them a candy–
JULIE FISHER: There you go. Yeah.
ROBERT MACNEIL: Well, something like that. Because you don’t need to dart across the street. So, does he get a candy every time he restrains his urge to run across–
JULIE FISHER: So, if a child was darting across the street because he wants to get candy in a candy store that happens to be there, we need to balance that and give him something that’s easier access, or more preferred, by refraining from engaging in that behavior. So, we would reinforce potentially with candy– not darting across the street. But we might actually train it as just learning to stay with an adult, so that becomes part of sort of what he learns is expected. That he be with an adult.
We may use a visual cue to show him that the expectation is in place, at this time. And then initially reinforce perhaps on kind of a dense schedule, meaning he’s getting a lot of candy at regular intervals. And then we would look at thinning that schedule of reinforcement. Maybe using a system that– shows that he’ll ultimately get reinforcement, even if it’s not delivered right away.
So, you see in the classrooms we use a lot of motivational systems. Token economies. Where kids are earning pennies or coins or points along the way. And once they amass a certain number, then they get to exchange that for something highly preferred. And it’s a very sort of systematic progression with sometimes– you know, and that’s the– the importance of analyzing the data is very often your moves forward have to sometimes pause and move backwards also, because you may find that you’ve skipped too far and now you’ve got to back up and sort of clean up again. So, it’s a very fluid, back and forth that’s based on your observations and the data you’re collecting every day.
ROBERT MACNEIL: Of course, part of growing up is– is darting out and taking risks, isn’t it? And– and separating yourself from the safety of your parent or caretaker, caregiver.
JULIE FISHER: I think for many of our kids that will unfortunately be something that we have to– limit to a certain extent just because there isn’t an awareness of just basic sort of personal safety issues. So– you know, there– there wouldn’t be a sense of danger for some of our kids. And– it’s hard to think about how you start to take risks with that. And let kids– sort of stretch their wings a bit when you’re talking about the streets of New York City, especially.
ROBERT MACNEIL: Why is it so important that the plans are individualized to each child? Why does it have to be so individualized to be the better treatment?
JULIE FISHER: Because kids are so different from one another. I mean, unlike any other kind of group of kids, children with autism are often more distinct from one another than they are similar. And even though we try to group kids sort of according to profile within classrooms, even within the same classroom, kids can present with such different strengths and areas of need, and I think you’re just not — you know, the — the clock is ticking for kids. And there are — there are so many things that they need to learn.
If you’re not individualizing, you’re wasting someone’s time in the mix. And I just think it’s critical that we really be looking. I mean, I think you have to if you’re gonna– if you’re gonna use time to the– the best of our abilities, you’ve got to be looking at an individual level about what kids need.
ROBERT MACNEIL: What does ABA do to motivate our kids in the way typical kids are motivated?
JULIE FISHER: The principles of that sort of underlie applied behavior analysis, the principles by which I feel like we all learn, they operate in such subtle, fast ways for all of us. And the bank of things that reinforce our behavior is so large and often encompasses a lot of social kinds of things. So, your eye contact, your smile to me gives me reinforcement. It lets me know that I’m doing something good. If that’s valuable to me, I will continue to do those things.
With our kids, the pool of things that function are reinforcers is much more limited. And we tend to have to rely on sometimes tangible things as opposed to social. We’re trying to pair both, as much as we can, so that social kinds of interactions become those valuable reinforcers. But often we’re having to use tangible items to motivate them to learn the kinds of things that we’re teaching.
ROBERT MACNEIL: Tangible items like what?
JULIE FISHER: Like access to their favorite– DS game or time on the iPad or edibles, in some cases. That kind of give them incentive to get through–
ROBERT MACNEIL: Rewards?
JULIE FISHER: Yeah. And I mean, you know, the other thing is our kids are working very hard. This is really effortful stuff that they’re doing. You know, I watch them and I see how difficult understanding things is for them. And I look at how amazingly they’re staying on task and they’re working, you know I go to work because I love it. But I also go to work because I get a paycheck. And it’s sort of the same principles at play. I mean, if you’re gonna exert effort, there has to be some sense of payoff.
ROBERT MACNEIL: And the normal child, the normal– excuse me, typical child gets that reinforcement tiny piece by tiny piece if he’s– he or she is in a fortunate parenting situation sort of a thousand times a day, I guess.
JULIE FISHER: Yep. By a look or a wink–
ROBERT MACNEIL: Good boy, bad boy, and don’t do this, do that. And through language.
JULIE FISHER: Yes. And subtle, nonverbal communication. And all the things that kids are attending to and absorbing. Yeah.