Fitting into the world

Autism researchers from multiple disciplines who attended a Jerusalem conference are focusing on how to help its victims interact smoothly.

By JUDY SIEGEL-ITZKOVICH
DR. ERIC HOLLANDER Rabbi Joshua Weinstein (photo credit: Ron Uriel)
DR. ERIC HOLLANDER Rabbi Joshua Weinstein
(photo credit: Ron Uriel)
Autism – the development disorder that affects the brain of about one in 100 people and is characterized by abnormal social interaction and communication, restricted interests and repetitive behavior – is a puzzle. Thus it is not surprising that the official worldwide symbol for raising awareness of autistic spectrum disorders (ASDs) is a colorful ribbon comprised of jigsaw parts.
Instead of being linked to a single gene or even a dozen and appearing as a uniform syndrome, ASDs are apparently connected to as many as 100 genes and are triggered by some as-yet-unknown environmental factors, and the condition ranges from mild to severe symptoms. Thus ASD, a lifetime condition usually diagnosed by the age of three and easier to tackle if this happens early, is similar in these characteristics to cancers.
A cure for autism – which is diagnosed much more often in boys than girls – is as elusive as the causes of the disorder. Yet there is little doubt that neuroscientists, geneticists, molecular biologists, pediatricians and other specialists are hot on the trail of treatments.
Special cognitive behavior, computer and other programs and trained assistance dogs have already improved the behavior of children with autism.
Progress is slowly being made, especially in diagnosis and screening.
Researchers at London’s Institute of Psychiatry write in the Journal of Neuroscience that they have found a way to distinguish the autistic brain from the normal brain with 90 percent accuracy, even noting how serious their condition is.
They programmed a computer to identify the pattern in autistic brains, and used harmless magnetic resonance instrument (MRI) scans to differentiate between them.
AS AUTISM, first identified in 1943, is very complex, it needs an interdisciplinary approach from scientists and doctors around the world. Jews, and Israel, are doing their part. Rabbi Joshua Weinstein, CEO of a home healthcare company in New York, was “minding my own business” some 13 years ago when he met a client who had several children with disabilities, including autism. Then he met more such Jewish parents. They complained that there was no Jewish school for ASD children in the city. “I had no background in this field, but I am good at setting up organizations and running them.” Devoting himself to the cause, he opened New York’s first Jewish school for children with autism. Called Shma Kolainu (“Hear Our Voices”), it then became non-denominational and began to receive government funding for its 1,000 pupils. This effort was followed in 2004 by his establishment of a similar school called Tishma in Jerusalem. Then he established a non-profit organization called Icare4autism (www.icare4autism.org) that aims at establishing a major international center for autism research and education in the Jerusalem area. An international conference Weinstein organized at the capital’s Ramada Hotel last month brought hundreds of professionals to hear lectures by dozens of experts in a variety of disciplines.
“Our mission,” said Weinstein at the conference, “includes the promotion of collaboration among similar research centers worldwide and providing support for the education of autistic children, as well as helping adults with autism to lead independent, productive lives. We also want to promote awareness of ASD. Parents face so many difficult situations minute by minute.
It’s a daily struggle.”
FAMILIES WITH an autistic child often take an emotional and physical beating, and Icare4autism also advises them on where to get help. While autistic children look perfectly healthy, which may be a consolation for their parents, it is also frustrating that their odd behavior thus seems so inexplicable to strangers. The condition can be very tough on marriages. A new longitudinal study from the University of Washington at Madison found that the parents of grown children with autism are more likely to divorce than couples with children who developed normally. Children with autism frequently require high levels of care and continue to live with parents as adults. The research, published in the August issue of the Journal of Family Psychology and the first to track the marital history of parents of adult children with autism, found that – in contrast to previous assumptions – parents do not have a greater risk of divorce when their affected child is young. But as the autistic child grows into adolescence and adulthood, the parents are more likely to divorce. Although findings reveal reduced prospects for a lasting marriage for parents raising a ASD child, the majority of marriages studied survived.
But coping with an autistic child can actually strengthen the family. Yuri Guy-Ron, chairman of the Israel Bar Association, told the Icare4autism conference participants that he was the proud father of four daughters, including a 16-year-old girl who suffers from PDD (pervasive development disorder), a milder form of autism. Named Lee, she doesn’t speak but writes with support, and has been integrated into the regular school system. “She is an honor student,” he said proudly. “As a lawyer, I deal in people’s rights, including those of the disabled.
So when I had a child with disabilities, I didn’t complain, cry or yell. It seemed natural in a way. My wife and I felt that autism would coexist in our world. If violence is not involved, there is no reason to prevent the integration of all people, including the autistic.”
But, added Guy-Ron, “There should be a way to prevent autism, and successful research into the disorder will have a huge impact on society. It is very important that public figures with autistic children speak openly about it and encourage people to accept differences. It can have a positive influence on people and their approach to values. That’s why I am here,” he said to enthusiastic applause.
NEW YORK psychiatrist Dr. Eric Hollander, the director of the compulsive, impulsive and ASD program at the Albert Einstein College of Medicine and Montefiore Medical Center and chairman of Icare4Autism’s advisory committee, discussed the major role of genes in autism. The risk for ASD in a child whose identical twin has it is very high; the risk drops to a third of that in fraternal twins. While experts agree that many genes are probably involved, environmental factors are clearly involved as triggers, said Hollander.
The number of ASD diagnoses has increased significantly in the past decade. “Some claim it’s an ‘epidemic,’ but others argue that the larger numbers are due to more awareness and more intensive screening,” said Hollander.
“There is no cure, but there are some approved medications that reduce symptoms such as aggression, self injury, attention deficits, irritability and repetitive behaviors.
But the drugs usually don’t get to the core of the disorder,” he continued. “Drug companies regard autism as a real potential market, so they have developed animal models and are looking to target behaviors and reduce risks and side effects.”
Hollander, in his Manhattan lab, has researched oxytocin, the brain peptide involved in women’s giving birth and breastfeeding. “It affects cognition, emotions, spoken language and developing bonds of trust. In experiments on mice, if you delete the gene that codes for this peptide, the rodents don’t recognize other animals.
Just sniffing oxytocin can affect human relationships.” So he has started to give oxytocin to people with ASD. “If you infuse it intravenously to facilitate delivery, it can reduce a lot of the repetitive behaviors in adults with Asperger’s syndrome, one of the ASDs.”
He found that patients given oxytocin – which can regulate some brain circuits – can more easily recognize emotion in spoken language and develop stronger social memory for up to two weeks after infusion. But this remains experimental, and the US Food and Drug Administration, he said, has not yet approved any treatment for the core symptoms of autism.
Clinical geneticist Dr. Eli Hatchwell, director of the genomics core facility at the Stony Brook University Medical Center in New York, had a sober view. “Since the human genome was sequenced 10 years ago, very little progress has been made in finding all causes of diseases. We are not living in a post-genomic era now. We are just entering the genomic era. Sequencing was only the first step. There is so much DNA variability among individuals that much work remains.” The DNA of the parents of an autistic child can be examined, said the clinical geneticist, and if there is straightforward disease, in which defective genes means that the child has inherited a disorder, you know what will happen. But there are very few diseases that have a single genetic cause, and this situation is not applicable to sporadic, complex disorders that do not behave in such a straightforward fashion, such as Alzheimer’s, schizophrenia and autism. Multiple abnormal genes must be found in an individual, plus environmental factors, for the disease to occur. “While statistical associations from large numbers of people are impressive, studies have not been successful because they don’t have a lot of impact in the clinic,” said Hatchwell, who was born in what was then Rhodesia and whose parents were born in Israel.
Dr. Dafna Ben Bashat of the functional brain imaging center at Tel Aviv Sourasky Medical Center said that in about 70% of children with ASD, the brain undergoes a period of precocious growth during early postnatal life, mainly in the frontal lobes.
This is followed by a slowing in growth in the later years of childhood. She has also studied white matter and grey matter in the brains of autistic children, and is refining advanced MRI methods for studying ASD.
Dr. Hanna Alonim, director of the Mifne Center for the treatment of ASD in Rosh Pinna, told the conference participants that normal brain development is a dialogue in which the brain generates neural circuits, and the child’s experiences determine which ones survive. During two decades of working with patients, she added, it has become clear that “infants under 12 months old may display symptoms of contact and communications disorders that might lead to a later diagnosis of ASD. Recent work has produced studies that make it possible to detect early signs of autism in their first year of life.”
Weinstein said he had high hopes for his organization as it was unique in combining biomedical researchers with clinicians and educators. It is also working with developing countries that claim not to have any autism or use an approach that is 10 or 15 years behind the times.
Besides organizing conferences, Weinstein is spending much time raising funds and planning Icare4autism’s Jerusalem-area campus, which he predicts will be the world’s largest multidisciplinary center for autism research, diagnosis, treatment and prevention. Jerusalem Mayor Nir Barkat, he said, is eager to help, as it will be prestigious and attract much interest in a world waiting for a cure.