Ma’ariv – Sof Shavuah - 22 September 2000
“TO CURE AUTISM”
A new method in Israel for treating autistic children, the Lovaas Method, is giving them hope to integrate into society and even recover.
THE HOPE TO GAIN TOM
An autistic child is sentenced in most cases to a disconnected life from his surroundings. The Lovaas Method, that is used by 45 children in Israel, is trying a different approach: Instead of connecting to the inner world of the child, it is connecting the child forcefully to the world that is around him. Sarit and Adam Sacks had their son Tom diagnosed autistic at the age of 1 ½ years and have adopted this method and are helping others to be exposed to it. They established the TOMI non profit organization, that is concentrating and giving direction to families that chose the Lovaas Method and also have translated into Hebrew the book ‘Let Me Hear Your Voice’ that is talking about two teenagers that were treated with this method and have recovered. Chen Kotas-Bar heard from them about this special treatment, the high expense of it, about 15,000 New Israeli Shekels (about US$4,000) per month, and how important it is to start as early as is possible. “If he will continue this way,” says Adam about the advancement of his son, “we will be out of it. Tommy will be a regular kid.”
Chen Kotas-Bar, author
Lihi Lapid, photography
When Tom Sacks was one and a half years old his parents discovered that he is autistic. Tom did not make eye contact, did not speak and did not respond to his surroundings. He did not play, but stared at the television and watched the same movie over and over. He repeated actions, walked on his tip toes and flapped his arms again and again. A team that diagnosed Tom concluded that his functioning is that of a three month old baby. His parents, Sarit and Adam Sacks, were told that if they put a lot of effort into Tom and he will work very hard, he will succeed one day to thread beads together, to jump up and to cut with scissors. That’s all. “I wanted to die,” says Adam Sacks. “I thought: What will be with my life? What is the point of it? How can I live when the maximum that my child can do is to cut with scissors?”
Sarit: “It’s worse than death. When your child dies, it’s horrible but it ends. It’s a kind of finality with closure. Here you have a child and he is in front of you, and you see him dying in front of you every day from the beginning. Your child is going and disappearing in front of your eyes and you cannot reach your hand to catch him.”
A year and four months later, Tom is already making eye contact. His condition stopped deteriorating. He is answering when he is called, he knows how to identify his body parts, he plays in the sandbox and in the playground, he rides his bicycle and is doing all the motor skills which are age appropriate. He still does not talk, but he is starting to babble. Since Sarit and Adam discovered that he is autistic they are treating him with behavioral treatment – the Lovaas Method – that is based primarily on dividing tasks, even complicated ones like language and communication, into a series of gradual steps, wherein the child is getting a reward for mastering every sub-task.
The techniques of the behavioral modification method that are trying to extinguish unwanted behaviors and teach more appropriate ones, are being used intensively, 40 hours per week, in a very systematic and uniform method, one on one and from a very young age. The effectiveness of the treatment is decreasing from age 5 and up, but even then it has some usefulness.
The numbers are talking about 50% success and even a cure. Children that were diagnosed in the past as autistic and were treated in this method are integrated into regular schools and you cannot distinguish between them and regular kids in terms of social and cognitive aspects. Even in the less successful cases the condition of the children is improving in a very substantial way. The treatment with this method is lasting about 3 years in a very intensive way, and sometimes even longer.
THE HOUSES AND THE CAR WERE SOLD
Today the lives of Sarit and Adam are surrounded around Tom. After they discovered that their son is autistic they came from Washington to Israel and decided to invest all of their time in their child. They sold their two houses and their expensive car and today they are living in a rented apartment, close to Tom’s therapists, where even their furniture is rented.
They are both lawyers in their professional life and in the US they had a very successful business. Today they do not work. From morning until night, seven days a week, their time is dedicated to Tom. A lot of patience, perseverance and belief, but also not a little amount of money, are needed in this method. The cost of the treatment: about 15,000 New Israeli Shekels (about US$4,000) per month, that are divided between the five outside members of the team which are treating Tom – 4 therapists and one supervisor. “I tell people: Sell your house, your car, the main thing is to help your child,” says Sarit. “What is the value of sitting in your house or car if your child is autistic? Don’t you prefer to be without your possessions but to save your child?”
Adam: “I would have even gone into a life of crime if necessary. I don’t care to sit my whole life in jail. I dedicate my life to my child and I know that Tommy expects it from me. I cannot tell him one day: Listen Tommy, I didn’t have the money to give you the best treatment there was because I didn’t want to sell my car. Tommy wants to be normal and I am doing everything that I can to help him.”
This week was published in Hebrew the book ‘Let Me Hear Your Voice’ by Catherine Maurice. The book that was published in the US about ten years ago, is telling the true story of the two autistic children of Maurice, that were treated in the Lovaas Method and today are normal, regular teenagers, that are learning in the regular educational system and have normal lives. They are talking about a breakthrough book that gave hope to many parents.
Since the book came out in the US the Lovaas Method received a place of respect in the treatment of autism. About a month ago the US magazine ‘Newsweek’ published an article that is telling among other things that the behavioral treatment of Lovaas is today the ‘standard treatment method’ for autism in the US. In Israel only about 45 families are treating their children with this method.
Sarit and Adam are aware of the importance of this book that is talking in essence of a cure to autism, and they thus decided to translate it on their own initiative into Hebrew and publish it in Israel. Since they arrived here about a year ago, they are doing everything that they can to assist other families with autistic kids. They established the non-profit organization TOMI (Hope and Resources Together), that is operating in two separate aspects: the center of information for parents, and behavioral treatment center based upon the Lovaas Method, that is providing behavioral programs that are specialized for every child.
“I know the secret that our Tommy can be normal,” says Sarit, “that autism is not a death sentence. How can I not tell it to other parents? We know English, we are educated, it’s easier for us to find solutions. It is not fair that others will not be exposed to it. Everybody deserves a chance to save his child.”
Sarit and Adam met in Israel in the beginning of the 90’s. She grew up here and he arrived from the US with a company that wanted to invest in business in Israel. Sarit was the sales representative of the company. They fell in love and moved to the US where they both studied law. In the end they decided not to work as lawyers but in business. The birth of their older son Tom two years and ten months ago they considered to very small details. They wanted him to be born after they finished studying and were more financially secure and more available as parents. “We waited for many years for a child,” says Sarit. “When Tommy was born I immediately thought about which preschool he would go to and which school. We went with him to Europe when he was less than a year old. He smiled, was giggling, waving hello to everyone. The whole time I was saying: What a baby, what a mature expression he has. We wanted to take him on a trip around the world, to pamper him, to teach him. We wanted to be the best parents there could be, and suddenly this hit us.”
When Sarit is talking about this punch she means autism. When Tom was a year and a half old he disconnected from his surroundings and lost the abilities that he had. “It was as if his brain was suddenly damaged in a serious car accident,” says Adam and Sarit. The process was gradual and this is why they didn’t notice it immediately, but understood the disconnection in different ways. They thought that he was concentrating on the computer or the television. At the same time their second child, Lior, was born and they also moved. The birth and the move they were told effected Tom – he wants to be more independent and that you need to leave him alone. Only when Sarit’s mother arrived to the US for a visit after she had not seen Tom in a while, they understood that the child does not respond. That he is closed in his own world.
“In the first stage,” says Adam, “you think that the child is deaf. He doesn’t look and he doesn’t respond. But a check showed that he actually does hear. This was a disappointment, because I understood that something else is hiding here. My mother is a special education teacher, and looking at Tommy and being familiar with other similar children we understood that he is autistic. I went to my pediatrician and told him: My child is silent. He said: Don’t worry, come back when he is two or three. I did not give up and said to the doctor: But I see here autism. I used the ‘forbidden word’, because it is taboo to say that ‘my child is autistic’. The doctor looked at me shocked. Then he looked at Tom and told me: He is not autistic. Don’t say that. He meant that I’m an hysterical father.”
THE CHILD IS LOST
Adam went home and started to learn about autism from the Internet. He ordered many books about the subject. Sarit continued reading and they investigated other stories of children that started to talk late. Like other parents of autistic kids they put a lot of hopes in the legends of children that didn’t speak and then suddenly started at the age of 6, or the story of the genius Albert Einstein that was silent until a relatively late age. “When the doctor said that it’s not autism,” says Sarit, “I felt a sense of relief. I wanted to believe that. I was angry with Adam that among the books that he ordered was a book called ‘Autism’. I told him, Why did you order this? This is not about Tommy. I was holding Tommy in my arms and called to him and he did not respond. I cried Tommy look at me, look at me and he was looking the other way as if on purpose. It is as if somebody came and stole my child. My child was lost. I understood that Adam is probably right and that Tommy is autistic. I knew that we have to start working with him, that there is no time to waste.”
Adam: “As early as you can reach the autistic child, his chances to get out of it are greater. It is a race against time. I couldn’t wait for Tommy to be two or three and then the doctor could tell me that something is wrong. I knew that he is autistic, that there is no time, that this is an emergency. The patient is bleeding to death, this is critical. An autistic child is losing important things every day, and as time passes, his condition is deteriorating.”
Sarit: “It is like cancer, a brain tumor, the same thing. It is spreading and spreading. They are saying it will be ok but you know it is not just going to be ok. I had our little kid, a three month old baby, and Tommy – and there was no difference between them. They were at the same level.”
Question: Did you feel guilty?
Adam: “There is a theory that I do not believe in today, that autism is maybe genetic. I thought that maybe something is wrong with me, maybe it’s from my genes.”
Sarit and Adam stopped working and dedicated their time to Tom. They tried to communicate with him in every possible way: Dancing, singing, bubbles. A team of professionals, among them psychologists, physical therapists and a social worker told them that the level of Tom is as a baby and gave them a very poor view of his future prognosis. The word autism nobody dared to tell them.
In one of the hospitals in Washington they looked at them with very sad eyes. “There’s nothing to do,” they were told. They recommended a treatment of half an hour per week with a speech therapist and another half an hour with an occupational therapist. Adam and Sarit did not find it adequate. They found the book by Catherine Maurice and decided to treat Tom with the Lovaas Method, the only one speaking of a cure.
ALL THE FRIENDS DISAPPEAR
Only last year in the middle of August, they heard the difficult sentencing that the maximum that Tommy can reach would be cutting with scissors and in less than a month in September they were already in Israel and with their four suitcases, two with clothes and two full of toys.
“I felt that I died and I need to reinvent myself,” says Adam, “I remembered that I always said that before I die I will come to Israel so I came to find a new world. I knew that I can find in the US doctors with dozens of degrees but they will not have the soul. Tommy will be for them just another number. I believed that in Israel it would be different.”
Question: How did the surroundings respond?
Sarit: “When your child is autistic you are losing all your friends. They are disappearing. It’s very hard. In the first stage people did not digest it. They told us: It’s in your imagination, the child is great. When the child is handicapped and looks ‘wrong’ it is as if it is somehow easier for people to accept. They expect to see the handicap. Autistic children are beautiful like angels. People told us: What a beautiful child. What do you want from him, to be perfect? Today our only friends are ones with children like Tommy. We feel comfortable with them. We have conversations about what we have done, where did we succeed, where did we fail and what more can be done. Someone from the outside cannot really understand what it is like.”
Question: Do you get comments?
“If he is acting weird, screaming or breaking something, immediately they look at us parents as if we don’t know how to properly raise our child. As if we are bad parents. We take him to a restaurant and he is walking around and the waiter is saying to us, ‘Why can’t he sit quietly?’
Question: You don’t answer in cases like that, “Because he’s autistic.”
Adam: “No because it is a private matter.”
TO TEACH EVERYTHING FROM SCRATCH
Autism was explained in 1943 by Dr. Leo Kanner of Baltimore, Maryland as a syndrome that appeared in a sub group of children that had schizophrenia. Then it was diagnosed as certain unhealthy aspects in behavior, but the most noticable among them was being lonely socially and having very poor or no language development.
In the past following the book of Bruno Battleheim about autism there was a concensus among experts that autism is based upon the ‘refrigerator mother’. The mothers of the 1950’s and 60’s had to face not only the difficulty of raising an autistic child, but also the guilt of thinking they caused the autism. Today it is still not clear what causes autism but the Battleheim theory is no longer relevant.
The number of children being diagnosed as autistic is rising and quadrupled itself in the past ten years. If in the past parents of autistic put an end to their lives or looked for a solution in institutionalizing their children, today they are refusing to let go: they do not let the child go inward. Like Ivar Lovaas they insist on piercing the bubble around him. A treatment with a psychologist or psychiatrist or seeing once every two weeks a speech therapist or occupational therapist are not enough. “There were still the ones who told me: If you love the child enough, he will want to be in your world. He just needs more love,” says Sarit. “I love my child to death and what does it do?”
Dr. Lovaas lives and operates at UCLA in Los Angeles, USA. With Lovaas there is a lot of healthy logic. In his method, if a child cannot learn in the way that we teach, then we must teach in a way that he can learn. Autistic children cannot learn like regular children do. They do not learn from observing the surroundings. The Lovaas Method is taking every task, even one of sitting or playing and breaking it down into its smallest components. The beginning is emphasizing usually two things: The reduction of bad behaviors such as throwing objects and temper tantrums, while increasing desireable behaviors like eye contact, being attentive, play skills and the use of language, even non verbal communication like pointing.
Lovaas is using his method for over 20 years but only the book of Maurice brought his method into the general public awareness in America. If once the method was based on rewards and punishments and even yelling and pinching, today there is only positive rewards for every activity that is correct in the form of a piece of biscuit or cracker. The punishment is only in silence. You don’t yell at the child. The ones who are criticizing this method are saying that it is actually like training dogs, creating robots, that the behavioral treatment by Lovaas is cruel, not flowing with the child and forcing upon him to get out of his world into our world.
The ones that believe that you cannot with gentleness bring children out of autism – if you can even get them out at all – are sticking with the way of Lovaas, that is just insisting not to let the child disappear. He does not let go. The intensity and the fact that you are dealing with one on one at home, in the natural and supportive environment of the child and from a very young age are very significant. Lovaas is refusing to let the child have one empty moment for his autistic behaviors. He doesn’t waste time on entering the emotional world of the autistic child and doesn’t let him be passive.
“Autistic who are not treated become like animals,” says Adam. “In its beginning our child was not existing, it was as if he did not see us. He didn’t talk, he didn’t respond, he didn’t communicate, everything that makes him a human being. He operated the computer but it was all mechanical, without a connection to us or the surroundings. When a child does that and he is two or three it’s still cute. Our job was to think of what will be when he is 20. I don’t want to flow with Tommy’s autism, I don’t want to enter his world. I want him to enter our world. We decided to take this phoenix and rebuild him from the beginning from scratch.
WORKING THE WHOLE WEEK
Today Adam and Sarit’s home looks like a kindergarden. With their return to Israel they put together a team that is working with Tom: four students that Sarit and Adam taught the Lovaas Method and supervisor Liat Lang that already worked in this method and supervises the whole team. In Israel by the way there are only five active supervisors and there is a tremendous lack of human resources in this area that can supervise behavioral treatments.
Six days a week from nine in the morning until twelve noon, Tommy has lessons with his therapists. Then Sarit and Adam are working with him as part of the approach of Lovaas that is demanding that anyone who is in contact with the child will also be taught how to do the program. Between three and six in the afternoon again Tom is working with therapists and then again afterwards with his parents. On Saturday the therapists are working only three hours with him and then the rest of the day again with his parents. The goal is not to let him have any waking hours without activity and not to allow him to just stare aimlessly.
Once a week there is a team meeting that is checking Tom’s progress. What the difficulties are, what is working and how to continue properly. For every good activity he is winning not only a biscuit but also cheers of happiness that seems like something from the world of sports.
“In the beginning Tommy really suffered,” says Sarit. “He cried and did not want to cooperate. He wanted to stay as he was and we were forcing him. These were very difficult weeks. There are parents that started this kind of treatment and stopped at this early stage because they couldn’t stand the difficulty of their child in this. As if he said: I’m in my world, and we said: No, sit with us and we will make demands on you. This is your little boy and all of a sudden you put him on a chair in a diaper, his feet not even touching the ground, he doesn’t understand a thing and we make demands. Now he is doing it happily, he goes to the room, sits down and waits for them to work with him.”
Question: Why make it so hard on him, maybe it’s good for him to be in his own world?
Adam: “There are those who will say that I am judging him but it is not true. I’m not judgmental, I just want Tommy to get better. He knows that he is sick and I want him to be normal. I’m not yelling or pinching him, but when he is crying because I am making him do something that is hard for him to do I know that it is for his own good. It is so hard to be autistic.”
Question: He needs to learn things that are natural for other children to understand?
“I remember that in the beginning Liat the supervisor showed me that Tom learned to clap his hands. You say to yourself: My child is almost two and a half and because he is clapping hands I should be happy? Today when I think of where Tommy started which was a disaster and where he is now – and I’m happy. If he will continue at this rate we will be out of it. Tommy will be a regular kid. I’m convinced that he will recover. I believe in him.”
DON’T WASTE TIME
The official diagnosis that Tom was actually autistic was done after the Sacks family moved to Israel. Jan Ole Almaas, the head of the Lovaas center in Norway, came to Israel to check a few children. Almaas arrives to Israel once every few months and is in contact with a few families of autistic children. Every day that Almaas spends with Tom and there were three days initially costs the family US$1,000. Almaas was the first to say out loud that Tom is autistic. “In the first time he diagnosed Tommy,” says Sarit. “After four months he visited again and said that Tom had advanced a year in just four months. He told us: You will receive your child back. I felt as if my life had begun again.”
Tom’s parents are telling of hundreds of calls that they are receiving from parents of autistic children. The Tomi organization is trying to be a hope and a source of light for these parents, that are many times delaying and moving from one hearing test to another before they start treating their child. The fact that there are hardly any supervisors in Israel, the large amount of money this method requires and the emotional strength and commitment required of the family are not making it any easier.
As of now, the Tomi organization was given two young women from the Israeli National Service group for a payment of 2,000 New Israeli Shekels (about US$500) per month per woman that will be trained as therapists with families and reduce the cost of the treatment. According to Adam and Sarit you can create an almost full program even at the price of 5,000-6,000 New Israeli Shekels (about US$1,250-1,500) per month.
In the US the argument is almost never about which method to use, but mainly about money – who will pay? In Israel excluding the money from social security that a family can receive (about 1,500 New Israeli Shekels, about US$375, for an autistic child per month) the burden of payment is falling upon the families. “The government should pay this,” says Adam. “Usually you are talking about 2-3 intensive years. An autistic child that was not treated correctly is growing up to be a classic autistic that needs institutional type treatment that will cost the state millions, not to mention the social aspect and loss to the family. It’s preferrable to spend much smaller amounts when the child is little. No one is promising that the child will be cured but there is a 50% chance and this is tremendous.”
Question: Can you be cured of autism?
“You can be a part of normal life.”
Sarit: “There is an argument about this. The ones who say even in spite of integrating into normal life and normal functioning that autism does not go away. I believe that it does. The pain on the other hand is something that I presume will stay forever. Everything that Tom is doing now, even the normal behavior for his age, I’m immediately wondering: Wait a minute, is this normal? Yes but it is also autistic behavior. I’m always afraid.”
Question: Do you cry?
“Until today I did not allow myself to fall apart. I have to hold everyone together. I always say to myself, when Tommy will be better I can allow myself this. Now I cannot, he is more important.”
WANT A REGULAR CHILD
In Israel there are today two children who are functioning as regular kids as a result of treatment in the Lovaas Method. One of them started last month in regular first grade. Both families refused to cooperate with the media. In the US families that had successful treatment outcomes and who’s children are part of regular society are leaving the states where they resided and starting their lives again from scratch elsewhere.
Even Catherine Maurice is appearing sometimes in conventions and conferences but not making contact with families any longer. Maurice is hurt because people were saying that her children were not truly autistic and this is why they succeeded so well. She is now hiding in her home. Still in contrast with a lot of other methods, there is objective research and statistical data about the success rates. The ones that are not becoming a part of the normal system are going to special education. Sarit and Adam on the other hand are promising that they will always continue to be active in the Tomi organization and will be in touch with parents of autistic children even when Tom will recover.
Their second child, Lior, is now a year and four months old. They are still afraid that maybe he too will be diagnosed as autistic. Meanwhile Lior is showing signs of good development but he still does not talk. Sarit and Adam remember that Tommy’s development was also ok at first. “When Lior was born we still did not know that something was wrong with Tommy,” says Sarit. “If we would have known we would have waited. We would not have had another child, one because Lior today is partially neglected in some ways and also because of the terrible fear that he too may become autistic. Every step that he is making I’m asking: Is this ok? He is just a baby and I know that I am putting so much pressure on him. The whole time I want to know, Lior are you normal or are you autistic?”
Meanwhile the lives of Sarit and Adam are dedicated to the treatment of Tom. When they went on vacation in London they took the whole treatment team along with them. They are not going out and are in touch only with parents of autistic children. “We have no normal life,” says Adam, “We stopped our lives for two to three years. When we will receive our child back, we will begin again. We will not be of course the same people, we are already different people. It’s like a soldier who is coming back from war with a case of shell shock. It is something that stays with you for the rest of your life.”
Question: Do you think about the day when he will be ok?
“What the first day of first grade for example? No. We think only about tomorrow and the day after.”
Question: What do you want him to be when he is older?
“I just want him to be normal. People want their children to be doctors, lawyers. I just want to have a normal child.”
Question: Would you tell him what happened?
“We have videos and we are going to show him everything. Children when they grow up are sometimes saying that their parents did not give them enough or did not love them enough. I hope that Tommy will see how much effort we made and will say: Wow my parents really loved me that much. They really did everything they could for me.”
Phone number of Tomi Center of Israel 972-3-6760513
Photos from the article…
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