Interview appearing in the Autism Society of America Advocate Nov-Dec 1994, conducted by Catherine Johnson.
Professor Ivar Lovaas of UCLA is best known for his long-term study of 19 autistic children whom he treated in the early 1970’s with 4,000 hours of intensive behavioral therapy, far more treatment time than anyone had ever put into small children before. Not surprisingly, his finding that 9 of these children, all now grown, went to achieve “normal functioning” — that fully 47% of the sample could be said to have recovered from autism — has been the subject of much controversy. Some authorities in the field are convinced, some are not; as with any research the issue cannot be resolved until others have replicated his findings. Replication studies are currently being set up at four sites. It is important to point out that Professor Lovaas does not claim to have found a cure for autism. As he says, “I don’t claim a cure because we haven’t gotten to the organic variable that is causing the autism. But the nervous system is pretty adaptable, and with intensive therapy the child may be able to work around his organic deviation.”
Professor Lovaas has turned his attention to the “other half”; he is concentrating on the children who do not respond well to his language-based treatment. These are the children whom he calls visual learners, whose spoken language remains very poor or absent even after years of training. “In a sense,” he says, “the kids who are recovered aren’t interesting anymore. In the next 5 years a lot of things will happen with the visual learners; we’ll begin to understand how to teach them, too.”
ADVOCATE: Why don’t we begin at the beginning?
LOVAAS: I first became interested in psychology during the German occupation of Norway — the country where I grew up — during World War II. I was a boy then, and I wondered whether such destructive actions were caused by genetics or by the environment. I hoped for the latter, because that would be easier to change. So you could say that my own childhood environment determined my eventual interest in the behavioral treatment of children with autism.
ADVOCATE: Jumping forward 20 years, how did you come to the idea of intensive behavioral therapy for children with autism?
LOVAAS: We began treatment research in 1963. We institutionalized 20 children at UCLA’s Neuropsychiatric Institute, and we treated them intensively for a year. They were ages 5 to 12; they were children, but not tiny. Many of them had already been institutionalized for a number of years. What we found was that with intensive behavioral therapy they could learn some very advanced concepts: abstract language, time concepts, prepositions, nouns — things people didn’t think autistic kids could learn. But they fell apart at discharge, especially the ones who went back to the state hospital where they lived. They lost everything they had learned. It was heartbreaking.
ADVOCATE: And the children who went back to their parents?
LOVAAS: For the most part they held onto their gains. The environment has a tremendous role to play in either maintaining or suppressing new skills. This is true for all of us, by the way.
ADVOCATE: People will lose new skills if the environment does not sustain them?
LOVAAS: Yes. We are extremely adaptable, more than any other animal, and once we have acquired a new skill we can lose it unless it is maintained by the environment. Nazi Germany shows us the critical importance of the environment to behavior. Here was the German culture, a culture that had done more to recognize and reward art and science than any other European nation, and yet it perpetrated some of the most savage acts of slaughter in history. A normal person can be highly affectionate in one environment, terribly destructive in another.
ADVOCATE: What you’re saying reminds me of a married couple I know who function pretty well inside their therapist’s office, but who can’t “take it home”. The wife told me that just walking inside the door of her house makes her feel like starting an argument, whether anything has happened to provoke her or not. The environment sets her off. Drug treatment programs also use this principle when they warn sober clients not to return to their former druggie environments.
LOVAAS: That’s what happened to the children who returned to the state hospitals. Going back to their old autistic environments made them return to their old autistic behaviors. Now, of course, this kind of statement can be misinterpreted to mean that autism is caused by the environment, which it is not. A “bad” environment can’t make a child have autism. What the environment can do is either support or discourage behaviors associated with autism. Another thing about environment: because their nervous systems are incredibly different from those of typical children, autistic children do not learn well from the average environment. The average family environment in which we raise children has evolved over thousands of years to meet the needs of these children. But the average environment doesn’t engage the autistic child; it passes the child by. It’s neutral. So you have a child with little or no experience. Even though he’s living in a rich family environment, it’s not a rich environment for that child. After we saw the children in our first project lose their gains, our goal became to create an environment that was as close to a normal environment as possible, but that worked for children with autism. First, we took them out of the hospital and clinic settings and taught them at home. Originally we had treated children in the hospital because of the widespread belief that in any experiment a controlled environment is best — and a hospital is a controlled environment. But teaching them in the hospital meant they didn’t transfer their learning to other environments. Second, we trained parents to work with their children, too. Before this time the idea had been that a professional worked with the child, then the parents fed, clothed, and loved him. But here, too, when the parents aren’t trained in the techniques, the child can regress. The family environment doesn’t support the gains the child has made with the professional.
ADVOCATE: We recently had an experience that illustrates exactly what you’re saying. We kept getting reports from Jimmy’s teacher about all sorts of things Jimmy was saying at school, and how much progress he was making in his language. And yet at home we weren’t seeing any change at all. Obviously, in your terms, he wasn’t generalizing his school gains to home. Finally we put our foot down: we started demanding that Jimmy use his new language at home, too. And he did.
LOVAAS: Our third innovation was to try to make the autistic child’s environment as intensive as that of other children. The typical child learns 16 hours a day, every day, weekends and holidays included. His environment is constructed so that he is always learning. So we created a treatment program that would make sure the autistic child was always learning, too. We gave each child in the study 40 hours of treatment a week, week-in, week-out. Eight hours a day isn’t as good as 16 hours a day, but it’s better than what autistic children normally get, and their parents extended the treatment beyond those 40 hours. So each child in the experimental group received an average of 4,000 hours of therapy over a course of two years or more. And these children made dramatic gains. 47% were able to attend regular classes and pass the first grade on their own. That group has maintained those gains throughout their childhoods.
ADVOCATE: How normal is normal? Would these children look normal not just on paper-and pencil tests, but out in the world?
LOVAAS: Unfortunately, until recently there haven’t been any good tests for residual signs of autism. So for the second follow-up, when the children averaged 13 years of age, we designed an interview that covered things like sense of humor, empathy, their ability to plan their day, whether they perseverated on topics or should change subjects, whether they had friends and how they talked about those friends. Small, subtle things. We did this because most high-functioning adults with autism, while they are doing extremely well, are still “different”. They tend to be socially awkward, they show not-quite reciprocal interacting, maybe they have a quaint way of putting things in terms of intonation and wording. Anyone who meets them can see this. The psychologists who conducted the interviews with the 13 year-olds were recruited by a clinician not associated with our clinic. They did not know that the young people they would be testing had once been diagnosed with autism; nor did they know that we had added teenagers with no history of psychiatric disturbance to the group. None of the psychologists noticed a difference between the autistic children and the others.
ADVOCATE: This is probably the point at which to raise the question of whether your experimental group was more “high-functioning” to begin with, as some critics have charged.
LOVAAS: Well that’s an interesting question, and we used a control group design to check for this possibility. Originally we wanted to match each child who entered the experimental condition with a child who entered the control group on the basis of intake IQ and chronological age. Then the procedure would have been to toss a coin to decide which child entered the intensive treatment and which child was to be placed in the control group. If the groups were different after treatment, this could then be attributed to the treatment provided to the experimental, intensive treatment group. It didn’t work out because the parents said they would strike. No parent would voluntarily allow his child to be put in the control group where he would receive almost no treatment at all - though we did, by the way, give control group children some behavior therapy. But it was always under 10 hours a week. We had to move to a wait-list control group, which was a variant on the first-come-first-served principle. We set up the two groups purely according to what staff were available just before the family contacted us. If we had staff members ready to perform intensive therapy with a child when the parents brought that child in, the child went into the experimental group. If we didn’t have staff available the child went into the control group.
ADVOCATE: I’ve read commentaries on your work by experts who say that while this isn’t exactly a bythe- books random assignment, it’s close enough - that your selection procedure was “functionally random”.
LOVAAS: We believe that the children who received the therapy were equivalent at the beginning of treatment to the children who did not. We had 20 “pre-treatment variables”: socioeconomic status of the family, number of siblings, age at diagnosis, use of recognizable words, toy play, and so on. These measures showed the groups to be equivalent at intake. We put together a second control group from another agency by matching those children with the experimental group children on intake IQ and chronological age. All groups had the same IQ at intake; there were just as many high-functioning children in the control groups as in the experimental group. And in the control groups only one child out of 40 achieved normal functioning by age 6.
ADVOCATE: What was the average IQ?
LOVAAS: Sixty. But this question of high-functioning children is very complicated, because when people say an adult is high-functioning, that judgment is retrospective. Today’s high-functioning adult may not have looked high-functioning at all when he was two years old. You can’t tell going in which child will succeed. I’ve been doing this for over 30 years, and I still can’t pick which child will do well and which child will not. I can’t tell you how often a professional has come to me with a child and said, “This child is going to do great, all he needs is some help with compliance.” And then that child turns out to be one of the ones who does not progress. No one can tell.
ADVOCATE: So you’re saying that you couldn’t have picked high-functioning children even if you’d wanted to?
LOVAAS: That’s right. Another aspect of the high-functioning idea: people think that a child who is high-functioning at 2 or 3 will just naturally make a lot of progress. But this, too, isn’t supported by the data, which show that, if anything, the children with highest IQ’s in the first place tend to regress to a small degree. [See Freeman, B.J., et al. (1985), “The Stability of Cognitive and Linguistic Parameters in Autism: A 5 Year Study” in the Journal of the American Academy of Child Psychiatry, Vol. 24, pages 290-311. Also see Lord, C. & Schopler, E. (1989), “The Role of Age at Assessment, Developmental Level, and Test in the Stability of Intelligence Scores in Young Autistic Children” in Journal of Autism and Developmental Disorders, Vol. 19, pages 483-499.] Their regression wasn’t statistically significant, and it may have been simply a matter of the higher-IQ children being given tests with a larger proportion of verbal items. But still, what you don’t see in these studies is the children with the highest-IQ showing the major gains many people expect they would.
Looking at this issue from another angle: about 30% of any random sample of children with autism will be called “high-functioning”. And yet only about 2% of all children with autism grow up to live independently. What happened to all of those other high-functioning little children? Obviously they did not make the progress people expect.
ADVOCATE: Did you find any factors that did predict success?
LOVAAS: IQ did correlate with outcome to an extent. We found a .58 correlation between IQ and success, which means that you cannot predict improvement in individual cases. And Professor Tristam Smith and I have completed a second study that found no correlation between IQ and success in the treatment. In this study we were able to use a match-pair, random assignment procedure. The study is not finished yet, but preliminary data show a comparable outcome to that of the 1987 study. The only truly strong predictor we found was the child’s skill in verbal imitation at the end of 3 months of treatment. 90% of the kids who learned verbal imitation at the end of 3 months of intensive treatment reached normal functioning. We’ve developed a test we call the “Early Learning Measure” (ELM) which is highly predictive. Essentially it measures how quickly the children learn. The child who starts out the fastest, remains the fastest. The fastest learners - and this may not be the child with the highest IQ going in - do the best. 90% of the children who score well on the ELM will achieve normal functioning.
ADVOCATE: What do you mean by verbal imitation?
LOVAAS: The children learn to echo an adult’s words or phrases, with correct pronunciation. These are words like “baby”, “mommy”, “daddy”, “car”, etc. The enunciation was clear and succinct, like that of typical children. Children go through an echoing stage; children with autism do also. This is at 35 months, average at beginning of treatment. The children who achieved normal-functioning became echolalic within 3 months; they like to echo adults’ speech.
Echoing is much more than just a rote kind of parroting, by the way. It’s part of the process of thinking. For example, if I say to you, “What is 2+2?” you’ll say “4”. But if I say to you, “What is 2+2 minus 3+6?”, you’ll echo it. You might echo it subvocally; you might not say it out loud because your mother has taught you not to echo out loud. But in your mind you’ll be echoing my question so as to hold onto it, to process it better.
ADVOCATE: That example could be a good exercise for teaching people about autism. I have to say, when you just asked me “What is 2+2-3+6” I instantly echoed It in my mind, word for word. While we don’t have a great deal of space, I think it’s important to try to tell parents something about what teachers and aides were actually doing with those children for 4,000 hours. What is “behavior therapy?”
LOVAAS: One thing it is not, is a method only for controlling bad behaviors such as tantrumming and the like. That is the least interesting thing you can do with behavior modification techniques. People also think of behavior modification as “Brave New World”, as a technique to make everybody fit one mold. But that’s just the opposite of what we want to do. We help build behavioral variability in children with autism, which increases their ability to adapt to new environments. When you study behaviorism you are alerting people to the variables that control behavior so as to escape them. That way people are less likely to be misled by tyrants, small or large.
Getting down to specifics, a “behavior” means anything you can observe. Social interactions are behaviors; an emotion is a behavior - anything measurable is a behavior. So in our study we used scientifically based principles of learning, adapted to autistic children, to teach the child everything he was missing. We taught the children how to pay attention, how to imitate sounds, how to understand what people were saying to them, how to use nouns, verbs, pronouns, prepositions, and other abstract language. We taught them how to play with toys, to show and receive affection, to relate to another child. We taught them everything.
We had to teach everything because we found that the autistic child needed teaching in everything. But we didn’t realize this when be began. For a long time we also thought that if we taught one critical skill, others would naturally follow - that, for instance, if you taught the child to be affectionate or emotionally attached to his parents, all kinds of other progress would automatically happen. For a while we also thought that if you just got the child talking, all kinds of other good things would follow. But none of this proved to be true; we could never find the “lever”. In autism there appears to be no one, central deficit; the children had many, many deficits in many, many areas, and each area had to be addressed specifically.
ADVOCATE: In reading The Me Book I was interested to see that you had even used operant conditioning to teach children with autism spontaneity!
LOVAAS: Spontaneity, and the desire to learn. Our goal was to create a joy of learning in the children, to make it more fun for them to tune in and learn than to spin or flap or wander around the room.
ADVOCATE: Watching your team work briefly with Jimmy, who has just turned 7, I was interested to see that you would actually terminate a “trial”, or a teaching session, after only 30 seconds or so to keep the student from becoming bored or resistant. At one point all Jimmy had to do was sit in his chair and raise his hands in the air when the teacher asked him to, then pat his head when the teacher asked him to. And that was it - he was up for a break. They kept it short and sweet.
LOVAAS: Almost all children we see respond with aggressive behaviors, when we try to teach them. Some children are aggressive against their adult therapists, while others are self-injurious. This is understandable, because for years these children have failed to understand what their parents and teachers have wanted them to learn. Who would not act in a similar manner? Aggression is a sign of healthy motivation, and this motivation can be used to build more socially appropriate behaviors for controlling the environment. Therefore, a cardinal principle is to maximize success, to always end on a success. And, make the learning steps easy enough that the child is sure to have a success.
ADVOCATE: That was another interesting concept I picked up from watching your team work; nothing is ever considered too “easy” for the child. You always intersperse some incredibly easy tasks — tasks the child is way beyond, like asking a 7 year old to raise his hands in the air — with the harder tasks.
LOVAAS: We ensure success to build confidence in the child that he can do it. Always, in every teaching sessions, the two fundamental goals, apart from the content being taught, are to make the child want to learn, and to make the child feel that he can learn. That he is competent.
ADVOCATE: So in every teaching session you are trying to increase the child’s motivation and confidence, as well as his skills. I know parents would like to hear some of the specific techniques involved.
LOVAAS: First of all, we taught all of the children one-on-one.
ADVOCATE: Sometimes two-on-one according to The Me Book. I remember several instances where you talk about having the main teacher sitting in front of the child, with an assistant behind the child to help him carry out the request.
LOVAAS: Yes. These children do not learn in groups. They can be taught to learn in groups, but it may take 1 or 2 years of intensive one-on-one training to reach that point. As I say, half of our children eventually came to the point where they could learn well on their own in a regular classroom setting. Another basic principle is to break down the content being taught into its smallest units, and then teach, and reinforce, each unit separately.
ADVOCATE: I noticed that in The Me Book you list 11 separate steps to be taught just for putting on pants.
LOVAAS: We also use “prompts”, which are a way of getting the child started following an instruction. So, for instance, if you say to your child, “Raise arms,” you prompt him by raising his arms for him - and then rewarding him lavishly. Gradually then you “fade back” the prompt on successive trials. Instead of raising his arms all the way, you raise them part of the way. Then, instead of raising his arms at all you might simple give his hands a small boost. You are fading back until the child can follow the instruction on his own.
ADVOCATE: For our readers’ sake I’d like to add that some of this can be done quite easily just in the course of the day. When Jimmy was two a speech therapist taught us a variation on the prompting technique, which he called “motoring through.” Every time we asked Jimmy to do something, we were to put our hands on him and walk him through the action. If we asked him to “close the door” we took his hand and motored him through the action of closing the door — instead of standing around feeling frustrated and upset that he wasn’t responding, which is what we had been doing. It was easy to do, and Jimmy acquired a huge amount of receptive language that way, and incidentally quite a bit of compliance. It was a wonderful teaching technique.
LOVAAS: “Shaping” is another important part of teaching through behavior therapy. When you shape a child’s behavior you gradually demand more accurate and complex responses from the child in order to receive the reward. With the “raise arms” instruction, at first you might praise and reward the child for any upward movement at all. Then, as he gets the hand of it, you withhold the reward until he gets his hands farther up. Eventually you have shaped the behavior to the point at which he can immediately raise his arms all the way up and hold them there for a couple of seconds before he is rewarded.
ADVOCATE: Your book has a lot of interesting things to say about choosing reinforcers.
LOVAAS: Any child can be taught if an adult has patience and access to what the child wants. Sometimes you have to be very creative about discovering what reward will work for your child. We had one little boy who didn’t seem to want anything. No food, no hugs, no tickling; nothing worked. It was pure effort trying to teach him. Then we found by accident that he liked to pour water from one glass to another. This was his obsession in life. So we got him water and glasses and that was his reward for learning. Every time he got a response right, he got to pour some water from one glass to another. This is what we call getting control over the child.
ADVOCATE: I was interested to read in your book how vitally important you consider compliance to be.
LOVAAS: It is impossible to expose the child to any higher skills when he will not cooperate.
ADVOCATE: Before we go on, I’d like to add that, speaking as a parent, you do have to do some studying to grasp these techniques. Read books, watch videotapes of teaching sessions, perhaps take a course or workshop. My husband and I had a few hours of training in behavior modification three years ago, which frankly was not enough, and we realized we would never have come up with this approach on our own. Behavior therapy doesn’t just come to a parent “naturally;” you really have to work at it if you’re going to do it in any kind of comprehensive way.
LOVAAS: That is the Golden Rule of autism treatment: does the therapist need training to perform the treatment? If no real training is needed, the treatment is not going to work. That was what was wrong with all the Bettelheim-based theories of curing the children by giving them love. Anyone can love these children, you’d be heartless not to. But it takes training to use love in a constructive manner. If you love a child with autism when he is self-injurious, you escalate self-injury. It takes a minimum of 9 months of closely supervised training in one-on-one therapy to learn how to build complex behavior, like languages. And then you have to be updated periodically, because new and better programs are continually being developed.
Beyond this, we find it’s important for trained staff to work in groups. Our therapists meet at least once a week to demonstrate their teaching techniques to each other. We structure it this way to prevent what we call “drift off criterion” - to keep the therapists on track. It’s very easy for any one therapist working alone to drift away from the programs. Regular meetings keep people from getting sloppy; they keep everyone’s motivation high.
ADVOCATE: Unfortunately, I can relate to this issue all too well. My husband and I are constantly setting up little “home programs” for Jimmy. We make a plan: we’re each going to do so much “table time, “ so much story-reading, so much toy play with him every single day. We start out great, then we hit the “drift off” point about three weeks later. It’s like going on a diet. Actually, it’s harder than going on a diet. Burnout is a real danger with these kids.
LOVAAS: That’s what we want to avoid. And at UCLA we have the added incentive that the student therapists will be getting a grade in my course at the end of the quarter!
ADVOCATE: Before we finish with techniques, we should raise the issue of aversives.
LOVAAS: Putting it in historical perspective: when we started working with these children back in the 60’s, very little was known about how to treat children with autism. We were asked to consult on some extreme forms of self-injury that were occurring in the large institutions. These were kids who were poking their eyes out, breaking their noses. What we found, again quite by accident, was that “contingent aversives” - in other words punishments - put a stop to it.
ADVOCATE: You discovered this accidentally?
LOVAAS: We noticed how panicked the extremely self-injurious children were by the thought of getting a shot.
ADVOCATE: You were seeing children who were suffering terrible pain at their own hands every day, and yet they were afraid of a shot?
LOVAAS: Yes. So we hypothesized, and then tested the hypothesis, that a punishment might work to stop the self-injurious behavior.
ADVOCATE: An external punishment might stop a self-punishment.
LOVAAS: The Problem was that it turned out the children adapted to the aversives. The self-injurious behavior would stop, maybe for two days, two hours, two months, and then it would pop right up again. We’d have to apply the aversives again, only this time we’d have to be more aversive. The aversives became like butchery; the more you learned about the client the more you thought that applying the aversives would be like being a butcher.
ADVOCATE: What were the aversives?
LOVAAS: A smack on the butt or an electric shock. Before we tried that the institutions had used restraints and chloral hydrate, and the children adapted to the drugs, too. They were taking doses of chloral hydrate that would kill you or me and it still wasn’t working. The problem was that we did not know enough about how to build alternative behaviors, like language, at that time. The child controlled his environment through self-injury, the only way he knew how. If all positive approaches have failed, the only use for aversives is to stop the self-injury long enough to teach alternative behaviors like language — if aversives are going to be used at all. But I’m afraid that most people who use aversives do not know how to teach these alternative behaviors.
ADVOCATE: We should mention here that when parents bring their children to the UCLA program they agree to the use of only two negative consequences for disruptive or “inappropriate” behaviors: saying “No”, and giving time-outs.
LOVAAS: Yes. But in actual practice the main strategy we use is to avoid negatives altogether. Our therapists “work through” the child’s behavior, keeping him on task even if he’s tantrumming or trying to bite. Certainly no negative interventions are implemented until parents have been informed of what the procedures consist of and the reasons for their use, and have given their explicit verbal consent for them.
ADVOCATE: Moving on, a lot of the debate about your work revolves around the question of whether 47% of autistic children could really achieve normal functioning through your program. It’s such an extraordinary result, but as my editor pointed out, even if 47% did recover, that still leaves 53% who did not. What are your thoughts on those children?
LOVAAS: 2 of the 19 showed no change at all even after 4,000 hours of treatment. The rest weren’t doing badly; they all made gains. But they were still autistic, that would still be their diagnosis. In our program, skill in auditory matching is the only predictor at the end of three months: can they imitate sounds like words? This shows the limitation of the program because it is really focused on vocal language. That’s why I don’t like to talk about high or low functioning kids, because we have some kids in the reading and writing program who are very smart, but very handicapped in the auditory program. At present there are few good programs for visual learners, but there is a beginning.
ADVOCATE: How do you know which kind of child you have?
LOVAAS: If he is becoming echolalic, he’s an auditory learner. You can safely make that assumption. But if a child is mute you cannot assume that he is a visual learner unless you have given him a chance to learn to imitate sounds and words. By the way, there are only a handful of professionals who can teach verbal imitation. It is the most difficult program to master, both for the therapist and the child. We’re working on the visual learners now, as are many other professionals throughout the country. We had one little boy who had not mastered verbal imitation, so we began teaching him the beginnings of writing. One of the things we taught him was to match the letters a-p-p-l-e to a card with the word “apple” spelled out on it, and we had also taught him to match the word-card “apple” to the apple itself. One day he sat sown at the table with the apple in front of him along with 10 or 12 alphabet cards, each with a different letter on it. He spontaneously, and very carefully, separated out the letters ap- p-l-e, and discarded all the rest. We didn’t teach him to do that, and I don’t think you would ever see it in an average 2 or 3 year old. It was a stroke of genius; he spontaneously organized his workplace without ever having been taught to do so. And yet this little boy had an intake IQ of 47 on the Bayley. There are nonverbal kids who love numbers and letters. Back in the ‘60’s, for instance, we found one nonverbal, extremely self-injurious boy at a local state hospital who learned the alphabet in one and a half hours of teaching. Some of the children were extremely smart. People can’t make the assumption that the child already has it all inside of him and you don’t have to do much treatment. People have wished this for 200 years, that it’s all inside and you just have to find a way to let it spring out. That was Bettelheim’s thinking, too, that a little warmth would let a fully-developed child jump out. How easy! But the truth is, it takes hours and hours and hours of intensive work to teach these children.
Human behavior - all human behavior, not just autistic behavior - changes very, very slowly, and in small increments. Darwin put it best: Nature does not make leaps. Throughout the history of autism treatments, people have always looked for sudden “breakthroughs”. We looked for them, too, in the beginning. But we found that the children never have breakthroughs. They just keep moving forward, slowly, steadily, with tremendous effort on everyone’s part.
ADVOCATE: Speaking as a parent, that is the most daunting aspect of your program how completely it could absorb every moment of your waking life.
LOVAAS: This is where parents need to become political. In Norway if you give birth to a child with autism and the disorder is diagnosed early, you are assigned a special ed teacher, one-on-one, for the child’s entire childhood up to age 18. It’s a good investment for the state, because the child can stay at home and in the community for longer. We need that here. Supplying each child with autism with his own special education teacher would be expensive; it would cost somewhere in the neighborhood of $30,000 a year per child. But the savings in terms of housing and support costs for children who go on to live independently would be enormous, somewhere between 2 to 3 million dollars over a lifetime. Intensive one-on-one teaching for developmentally disabled children starting at the age of 2 should be an entitlement.
ADVOCATE: It’s going to have to be an entitlement, since the cost of trying to do this on your own, with no help from the government, is going to be out of reach for most families.
LOVAAS: People who want to become politically involved can contact FEAT, Families for Early Autism Treatment, in Sacramento. In the meantime, individual families can hire an attorney and sue the state for these educational benefits. The parents I know who have done this have gone through an extremely stressful set of court proceedings.
They can also take advantage of local volunteers. I can’t tell you how many families we know who have been able to recruit volunteers from family, schools, and churches to put in the necessary hours. Sometimes a family will pay one person around $15,000 to oversee the whole program on a 20 hour a week basis, and that person then oversees the volunteers. Families who hire students pay them somewhere in the range of $5.00 to $8.00 an hour.
ADVOCATE: I think it would be good to point out that although you do need training in the techniques, most people can learn how to do this.
LOVAAS: Some people take to the training right away; others don’t. But many people can do this without years of expensive training. In our own program we charge parents $1,400 for a two day workshop to teach the methods. Then we usually follow up with a second workshop two months later for $600 or $700. Some families have been able to get this paid for by the school district.
I’d also like to point out that there are many behavior therapists helping develop programs across the country. The wonderful thing about behavior therapy is that it’s not tied to one expert; there is no Freud. These techniques have been built up by many behaviorists working with many children over many years’ time. It is a constantly developing system. For instance, we know that these children have a crucial deficit in what we call “observational learning”. That is, they don’t learn by watching what the child next to them is learning - which is critical in a classroom setting. So a teacher will say to one child, “Where do you live?” and the child will answer, “Chicago”. Then you ask the autistic child, sitting beside him in the same classroom, “Where does he live?” and the autistic child will not answer because he may not even have heard the other child respond to the teacher.
This is a basic principle in a classroom environment: a child must be able to learn from what he hears another child learning. So now we are setting up steps to teach autistic children how to do this - but we are only beginning this now! It took us 30 years to figure out how to do this. That is what I mean when I say it is a constantly evolving field. The field of behaviorism is a lot of people working together contributing to effective treatments in a step-by-step, cumulative manner. And that is what you need for your child. A lot of people working together.
ADVOCATE: I think the question that is probably on a lot of people’s minds at this point is: if you can’t do it full-time, is it worth even bothering? Is a little better than none?
LOVAAS: A little is definitely better than none. The children in the control group, who had only a little behavior therapy each week, like being toilet-trained and gaining some compliance, may have made important gains. These techniques are worth knowing and practicing to the extent that you can.
ADVOCATE: And what about age? Parents can get the impression, reading your work, that if they didn’t begin behavioral therapy by age 4 all is lost.
LOVAAS: There is no age cut-off for behavioral therapy. As I said, behavior therapy is incremental; it goes step by step. So you start where you are today, and you move forward in tiny steps. Say you have an 8 year old who likes to echo: well, he’s part of the way into the program. Half of the kids never became echolalic. Take the program and begin where he is. On the other hand, early intervention is important because it allows the children to develop friendships at age 3 and 4, when children’s friendships are not yet enormously complicated. The idea is to hook the autistic child on other children early on so that the other children provide a treatment. The parents “fade out” and the peers “fade in”.
ADVOCATE: Before meeting you for this interview I canvassed my friends for questions, and one of the biggest ones that came up had to do with social skills. How do you use behavior therapy techniques to help your child develop friendships? It seems so much more complex than teaching nouns and prepositions.
LOVAAS: Social ineptness is the definition of autism; it’s the one thing all autistic children have in common. They don’t have IQ in common; they don’t have problems with emotional attachment in common. But they all have social delays. They do not play with peers. With the children in our study, first we work with them intensively for around 6 months to get them to the point where their language skills were pretty good. They might be 3 or 4 years old now, and they can sit in a chair when an adult tells them to, sit in a circle when an adult asks them to do that, and they have gotten over their tantrums.
Then we look for a school. We go with the mom to a neighborhood and find a pre-school with one or two teachers in a class of 10 children and we ask them, “Would you accept a child who has difficulties playing with other children?” We don’t mention autism at first, because it blows teachers off, giving them ideas of Bettelheim, or the “cold” parent, or of institutionalization forever. We just ask if they can take a child who doesn’t play with other kids too well, and whose language isn’t that great. And we always look for a teacher whose style is structured. Autistic children do better with these teachers than with the teachers who let things free-flow.
Then we ask the teacher, “Can we be present when the child is here?” When she says yes, we say, “Can we suggest new ways of handling him if things don’t go well?” If she says yes again, we settle on that school.
Then we decide what portion of the day the child is going to attend. Maybe we decide that he will go for circle time; if so we practice circle time at home. Or maybe we decide the free play period is the best place to start, so we practice free playtime at home. Ring around the rosy is an easy game for any child to learn, and we practice it at home with the mom and the student therapists playing the other kids. One good thing about pre-school, in terms of integrating an autistic child, is that pre-school activities are mostly high level, socially acceptable forms of self-stim. “Itsy-Bitsy-Spider” is a good example, and there are many more.
Then the child goes to the school, with his therapist or mom as a “shadow”, and he stays there for only half an hour so he’s successful. Then gradually we extend the time in school, and fade the “shadow’s” prompts. The problem is that as long as the aide is there things look real good, but what do you do when the mom or therapist begins to fade back? If the teacher is willing to take over her functions, that’s OK, but not all teachers will do that. The critical thing at this point is that you don’t want the child to regress. So the child may need his aide for a long, long time, which is what the Norwegian system is based on. Once the child is getting along in pre-school and the regular teacher and peers have control over him, then he’ll on his way. Half of our kids could do this, half could not. The ultimate goal is to transfer control from the teacher to the other children. I believe that this is why the normal-functioning children in our study did not regress: we brought them to the point where other children now controlled their behavior. As I say, it’s easier to do this in pre-school because the social skills of preschoolers are not very advanced.
ADVOCATE: How do you go about helping the child transfer control from his aide to other children?
LOVAAS: Say the child doesn’t talk to other kids. He’ll only talk to adults. We ask the teacher which child in class seems to like the kid best, and wants to play with him. The teacher tells us, “Chuck likes Billy a lot”. So we go to Chuck’s mother and we say, “Can Chuck come and play with Bill?” If she says yes, we ask if Chuck can come over for two or three afternoons a week, with his mother, if she wants to join. Then we teach Billy to talk to Chuck, and Chuck to talk to Billy - since Billy can already talk and play with us. We teach them to play together. We transfer control from the adult to the peer. We use board games a lot because the children have to take turns rolling the dice, which is a good model for the backand- forth of conversation. We look for games that depend on language - always remembering it is a very slow process, with no sudden breakthroughs.
ADVOCATE: What are your thoughts on the notion that autism is a spectrum, that there are people with mild cases of autism who move through life without ever being diagnosed? This is an idea that intrigues a lot of people in the wider public; TIME MAGAZINE ran a tongue-in-cheek piece they called “Diagnosing Bill Gates”. They put Gates side-by-side with Temple Grandin and listed all the similarities between them.
LOVAAS: I find the idea of mild autism extremely interesting. In the Scandinavian countries there are a lot of mildly autistic individuals, because they selected themselves out for that climate. They like to be alone in the dark; they thrive on it. Some people kill themselves in those cold, isolated regions, but a mildly autistic person might like it. When you talk to these people they don’t look in your eyes, they look at your shoes, and the conversation is a bit echolalic. You’ll say, “The weather’s pretty good today,” and they’ll say, “Yeah, pretty good today.”
If you think of autistic children as being on a continuum with the rest of us, then you stop seeing them as pieces of pathology; they fit into the natural order of things. I believe that the unusual persons come into our world as people who are here to protect us against an uncertain future. There is strength in variability. If you look at the great scientists, they have allowed us to survive in a future we could not have predicted. And if you look at the great artists, the great artists have defined the future for us. Van Gogh is a good example: someone who cuts off his ear to impress his girlfriend is definitely lacking in social skills. What a loss to the world if we had sensitized him to social reinforcers and taught him the skills to get them.
In general, Society depends on us average persons. We pay the taxes, we raise the kids, we go to work. But if everybody were like us we wouldn’t be assured of survival. Part of the future belongs to the individuals who are autistic-like - to the people we think of as “nerds”. A “nerd” is a person who is awkward in social situations, which could certainly be a sign of mild autism. But without nerds perhaps we wouldn’t have computer science.
I see autistic children as extremely interesting. I work with them 40 hours a week, and the more I get to know the, the more interesting they are. We are learning something new every day.
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