The puzzle of pervasive developmental disorder

A handful of five-year-olds sit in a half circle facing their kindergarten teacher, who activates a green puppet she wears on her hand. They look at her intently and are absolutely quiet. Just a few months ago, at the beginning of the school year, many of the children screamed because they were so terrified of sitting so close to other children – who suffer from autism spectrum disorder (ASD), and some of them will never speak.

In an adjacent building in a class of teenage boys, some of the pupils move around while the patient young special- education teacher speaks. They too suffer from ASD, which around the world affects one out of every 100 children or even fewer, and the rate of boys compared to girls is four to one. The Welfare and Social Services Ministry reported last month that between 2004 and 2011 there was a five-fold increase in the diagnosis of autism.

Resulting from an unknown number of defective genes and apparently triggered by any of a number of environmental conditions that cause abnormal biology and chemistry in the brain, pervasive developmental disorder or autism spectrum disorder first appears around the child’s second birthday and affects the brain’s normal development of communication and social skills. The genetic aspect is clear because identical twins are much more likely than fraternal twins or ordinary siblings to both have autism. Chromosomal abnormalities and other nervous system (neurological) problems are also more common in families with autism. It is not clear whether the autism rate has really skyrocketed in recent years or is due to a large increase in diagnosis caused by greater awareness of the neurological condition. About 70 percent of autistic children function on a level of mental disability.

Suggested, but not proven, as possible causes are: a father aged over 40, having a second pregnancy not long after delivering a baby, diet, digestive tract changes, being exposed to mercury or other pollutants and the body’s inability to properly use vitamins and minerals.

Some children with autism appear normal before their first or second birthday and then suddenly “regress,” losing language or social skills they had previously gained.

Among the symptoms of the condition are being overly sensitive in sight, hearing, touch, smell or taste; suffering unusual distress when routines are changed; performing repeated body movements; showing unusual attachments to objects; being unable to start or maintain a social conversation; communicating with gestures instead of words; developing language slowly or not at all; failing to adjust one’s gaze to look at objects that others are looking at; not making friends or playing interactive games; being withdrawn; not responding to eye contact or smiles or avoiding eye contact; treating others as if they are objects; preferring to spend time alone, rather than with others; withdrawing from physical contact because it is overstimulating or overwhelming; preferring solitary or ritualistic play; having a short attention span and very narrow interest; showing aggression; and using repetitive body movements.

Medications are often given to treat behavior or emotional problems that people with autism may have, such as aggression, anxiety, attention problems, extreme compulsions, hyperactivity, impulsiveness, irritability, mood swings, outbursts, sleep difficulty and tantrums. Some parents have tried a gluten-free or milk-free diet in the hope it will improve the children’s behavior, but research has not produced a definite answer.

ALL THE experts on autism agree that the earlier that a child is treated with applied behavior analysis (ABA), medications, occupational therapy, physiotherapy and speech-language therapy, the better he or she will develop.

While every municipality offers a “communications kindergarten” for autistic children, there is only a handful of educational institutions in Israel and the only one in the capital – the Tishma School and Center for Autism – that offers ABA therapy, which has been proven scientifically to be the most effective. A New York school was founded by businessman Joshua Weinstein, who was approached by other Jews about the need for a school for Jewish children with autism. After the educational institution – Shma Kolainu (Hear Our Voices) – he set up in Brooklyn was successful, he did the same (with just two children) in a Jerusalem apartment in 2001. Two facilities – one at 31 Kanaei Hagalil Street in Katamonim and 21 Even Ha’ezel Street in the Ezrat Torah neighborhood – were established, but the rented facilities are old and need to be replaced by a modern, joint campus.

The Jerusalem schools have a total of around 70 pupils aged up to 21 – boys and girls (in separate classes from the age of 12), religious and secular.

Tishma director-general Revital Lavi-Cohen (a Hebrew University graduate in sociology), gave The Jerusalem Post a tour, along with Marc Garson, the director of development; board-certified behavior analyst and supervisor Hannah Sykes-Haas and Lisa Lebovic, the educational director.

The activities are provided by specially trained teachers one on one or even two teachers to one; there is a total of 127 staffers in the two schools. ABA, they explained, is based on the study of human behavior and has a goal to improve it. “It was originally the work of B.F. Skinner, and was not created for children with ASD,” they said. Skinner, a 20th-century Harvard University psychologist, invented the Skinner Box for teaching conditioning, creating his own philosophy of science called radical behaviorism, and founding his own school of experimental research psychology.

Skinner believed that behavior could be changed through the systematic allocation of rewards.

In the 1960s, a Norwegian (who now lives in the US) named Ivar Lovaas applied Skinner’s principles to treatment of autism. “We try to build a positive repertoire of the children’s behaviors, piece by piece,” the Tishma staffers said. Because all individual programs are prepared with the smallest details, skills are taught in small increments, data is recorded daily and the kind of reinforcers used are monitored by all staff members, it enables us to efficiently draw conclusions.

We can tell in just minutes whether it works and if they have learned new skills.”

ABA, according to research published by by Assaf Harofeh Medical Center and university researchers “is targeted at ameliorating the core deficits in autism.... It begins with focusing on teaching small, measurable units of behavior using discrete trial treatment in mass trials. The treatment is based on systematic, step-by-step teaching using prompts and useful reinforcements. Intervention is provided by experienced behavioral therapists.

A successful graduate, at 21, moves on to sheltered housing and, it is hoped, will be qualified to perform simple jobs. But as the variations in autism are so great, there are even university professors who have milder forms and have researched their own conditions.

IN ORDINARY kindergartens, they continued, children learn their body parts by singing them one after the other and pointing. It’s a very broad skill. But an autistic child doesn’t know what part is being pointed to. “Even if he knows what a nose it, he doesn’t necessarily know where to wipe if he has the sniffles.” Positive reinforcement is very useful in making connections.

The children meet with teachers not only one on one but in small groups divided according to age, with children three years apart together, but also according to their functioning level. Their behaviors – not only harmful ones – are analyzed objectively.

“Parents usually notice the problems when the babies are about 18 months old. It takes a while until the final diagnosis is given,” said Lebovic. “The parents feel such a loss; it is a great crisis for them. Many delay doing something after the condition is given a name. Sometimes, parents struggle to get their child into a regular kindergarten, but finally they realize they have to take him to a special school.”

Lavi-Cohen noted that since Channel 2 TV ran an Israeli dramatic series called Yellow Peppers on an autistic child, awareness of the condition here apparently increased. “Today, there is much more awareness.”

Tishma pupils spend the whole day from 8 a.m. to 5 p.m. and Fridays until noon in the institution, and some work weekly at the Jerusalem Biblical Zoo. The boys I met spoke about their anticipated time at the zoo with much excitement.

To give them additional skills, Tishma installed a simple “cafe” where children can pour glasses of juice, put them on a tray and serve peers. “We teach them how to get onto a bus or order meals in a restaurant,” said Sykes- Haas. The pupils seems very pleased with themselves when they are applauded, which is more positive enforcement. “We want to give them as much independence as they can so they have a dignified life,” added Lebovic. “Goals are set according to the child's individual needs and potential. For one child, being toilet trained will boost his family's quality of life to a degree we can only begin to understand; for another, making eye-contact and saying ‘Mommy’ for the first time are a major step, while for others, being included in a regular classroom and making friends with regular developing children are a milestone.”

Tishma’s two facilities are funded by the Education, Health and Welfare and Social Affairs ministries, but to cover the rest of expenses, the non-profit organization seeks funding from foundations and other donors. It is Garson’s job to raise funds for Tishma – and public awareness of the institution. “We really need a single campus for the schools and to unify them. And the existing facilities are very makeshift. Children are exposed to the elements when they go from one part to another, and the facilities are rather primitive. Jerusalem Mayor Nir Barkat visited Tishma a few years ago, but there are still no municipal plans to help the organization get a new place.”