Many of the non-professionals who establish organizations for better research and treatment of disabilities were inspired to do so by a family member who suffered from the condition.
Not so Dr. Joshua Weinstein, the longtime CEO of a home healthcare company in New York. He had no personal knowledge of the complex developmental disorder until the day some 15 years ago when a client told him he had several children with disabilities, including autism, and complained about a dearth of facilities for Jewish children.
Autism spectrum disorder (ASD), as it is now referred to, is diagnosed in one out of 88 children, and it is four times more common in boys than in girls. Genes, perhaps as many as 100 of them, are involved, but there is also some environmental trigger for its appearance.
“I had no background in this field, but I am good at setting up organizations and running them,” Weinstein said. Devoting himself to the cause, he opened New York’s first Jewish school for children with autism. Called Shma Kolainu (“Hear Our Voices”), it began to receive government funding for some 1,000 pupils when it became non-denominational.
In 2004, Weinstein established a similar school, called Tishma, in Jerusalem. Then he established a non-profit organization called ICare4Autism, which will establish a world center for autism research, diagnosis, treatment and education in the Bezalel Academy at the Hebrew University campus on Jerusalem’s Mount Scopus after the arts academy builds its own facilities in the capital’s Russian Compound. The center will also include a model school for teaching professionals, as well as a music center. “We know we’re on the right track,” he said. “We have enough support to make the purchase.”
Weinstein, who has homes in both Jerusalem and New York and shuttles between them on a monthly basis, was here to orchestrate his organization’s international conference at the capital’s International Convention Center. Attended by 1,000 Israeli and foreign participants from 20 countries, the two-day conference presented a detailed plan for ICare4Autism to lead the global movement to help patients and their families.
“It would have been cheaper to build in New York. But from the beginning, I said the center must be in Jerusalem because this city is the center of the world. Everybody comes to Jerusalem. We had thought of building an entirely new center, but Mayor Nir Barkat heard of it, reached out to me and matched us up with Bezalel. The buildings are already there; we just have to buy the two-hectare (4.9-acre) campus and rehabilitate and expand it. It will fit our needs. We hope to take it over sometime in 2015.” The cost of the campus is estimated at $50 million, and “we have already raised several million dollars, but we are looking for a $350 million endowment to keep it going,” Weinstein told The Jerusalem Post
in an interview during the conference.
“The facility will include a global research center to coordinate autism research via a computer database and facilitate collaboration with research abroad. We firmly believe that collaboration will lead to the breakthroughs necessary to best confront this condition, and we are confident that ICare4Autism will be the catalyst in this global process,” he said. “There are people even in the same university who do similar research but don’t know about each other. If they get together, the research could be even better. We invite everybody and every organization to join the cause.”
Not the typical black-kippa-wearing man, Weinstein shook hands enthusiastically with Dame Stephanie Shirley, a British businesswoman and philanthropist who was the keynote speaker at the conference. Shirley shared her own personal experiences with the participants, explaining how her family’s struggles in raising their autistic son encouraged her to become active in the global cause of ASD policy and awareness.
Weinstein also hugged his guest, Dr. Sami Basha, an expert in disability from the Palestinian Authority, who attended the conference as well. “We are completely apolitical,” he asserted. “Sami has already made partners with Israeli institutions here. We are 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.”
THOUGH A long interview with Prof.
Stephen Shore proceeded as with any other academic, from the outset he presented himself as different. He was diagnosed at the age of two-and-a-half as suffering from ASD, specifically Asperger syndrome, which is regarded as relatively mild but still causes significant difficulties in social interaction and often physical clumsiness, even though the sufferer has relatively good preservation of linguistic and cognitive development.
The son of a man who owned a liquor store and a woman with a degree in business administration, Shore was diagnosed at a special children’s clinic a full year after he presented symptoms of autism. He lost his ability to speak at 18 months, but it reappeared around his fourth birthday. Doctors recommended to his parents that he be institutionalized, but they refused, instead carrying out an intensive home-based intervention program.
“My brother was diagnosed with mild intellectual disability; he is living with my sister, who is four years older than me. She, too, has some problems. My parents are normal, but I recall an uncle on my mother’s side who was in supportive living facilities.
They didn’t talk then about genetics, but I see some autistic characteristics on my mother’s side of her family.”
The Adelphi scholar attended a regular school. He had a bar mitzva at age 13, but he had difficulty learning the Torah portion and blessings in Hebrew, so his parents recorded for him the recitation by a member of his synagogue. “I memorized it as a song.”
For as long as he can remember, his parents used the word “autism.”
“I didn’t know much about it. I was taken to a physician, and then a psychiatrist, every week. In elementary school, I had a loss of functional communications, meltdowns and self-abusive behavior. It was a social and academic catastrophe. I was bullied by the other kids. My teachers didn’t understand me either. I spent most of my time going to the library and reading things about my interests – astronomy, sciences, dinosaurs, history and aviation. I graduated from elementary school, but not with good marks. I was a grade behind in math and reading, but in high school, it was better. I figured out how to use words. I even since managed to teach statistics on a university level.”
He grew up in Massachusetts and obtained one bachelor’s degree in music education and another in accounting and information systems.
He went on for a master’s degree in music education and a doctorate in special education at the University of Boston and has been teaching at Adelphi University on Long Island, New York, since 2009.
He still has some of the characteristics he had at school. “I like to think I work around them and stay away from difficult areas. I have to wear loose clothing – no suit jackets, which make me feel constricted with too much sensory input, like a person wearing a burlap bag. And sometimes I miss some subtle social cues. Office politics send me mixed messages. I also don’t like strong light and noise, which can be distracting for me. Lighting can be like a spotlight – blinding, like looking into sun.”
He married Yi Liu, a music teacher who was born and raised in Shanghai.
“We met in Boston as music students,” he said. “She protects me from disturbances to my system. I speak a little Hebrew, Russian and Chinese. I travel a lot and have been to almost 30 countries and 45 US states.” He lectures about his personal experiences, education, inclusion of the disabled, maneuvering through challenges, employment and continuing education.
“My wife often travels with me and she came to Jerusalem, which she had wanted to see even before we were married. It’s actually better to visit other countries, because when one moves to another country, social mistakes are attributed to being a foreigner when in fact it’s autism.”
Shore plays the trombone, the trumpet, the French horn and the tuba, a surprising collection for someone with Asperger’s. The music is “out in front of me, so I feel I have control over it, which is important. If music were blaring behind me, it would be a problem,” he said.
He is also good at mechanical things. “I have self-winding watches and take them apart and put them back together. As a child, I took the body from one watch, a motor from the other. I also took bicycles apart.” He remembers that instead of going to his own high school prom, he went to a college orientation instead.
The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders
(DSM-IV) will soon appear in a fifth edition and include new definitions for autism. “It will be autism spectrum, a continuum with a rating of one to three based on behavior. There will no longer be Asperger’s or pervasive developmental disorder (PDD) in the fifth edition. That’s unfortunate, as it’s a nice category to have. Now there will be no subcategories, which I regret.
Some people with Asperger’s are opposed to this, because they think they will lose their identity and be classified with having a faulty communications disorder.
“When I speak,” he continued, “I ask my audience how many would hire someone with Asperger’s. Most people would. But if I say the person has problems with social communications, they say no, because it would ‘alienate customers.’ In any case, the DSM never was and is not meant to be a diagnostic tool for psychiatric conditions; it is a method for reimbursement for the health maintenance organizations,” insisted Shore, who delivered a keynote lecture at the conference.
In the US, there are a lot of people with autism who have no health insurance.
Some health insurance firms are behind the restructuring of the DSM V definitions, he maintained.
“Asperger’s was first diagnosed in 1944 by an Austrian physician, Hans Asperger, who saw children with a variety of amazing skills but communications and motor-control problems. Even then, the doctor recommended ways to use those strengths,” Shore has friends with Asperger’s who, if you tell them your birth date can tell you what day in the week it was or how many seconds they have lived.
“And they will be right. Perhaps different areas of the brain develop differently,” he concludes. He himself is good at computer programs and proofreading. “I can zoom right in to mistakes to find extra spaces between words. I notice them before reading the content.”
Asked whether he would swallow a pill that could somehow cure ASD, Shore said he would be reluctant to do so. “I would be glad to get rid of some of the symptoms, but I like many of the characteristics and skills I have.
Shore is optimistic that things will improve. “There is more awareness of ASD and more tolerance. In 10 years, it will be easier to find the strengths of people with autism. They will live more productive lives and enjoy better educational interventions and medical care.” There will be better diagnostics, but he fears that if prenatal tests show a fetus has autism, it could lead to abortions and eugenics. He believes that early intervention is the key to improving lives of people on the spectrum.
SHORE HEARD of ICare4Autism about three years ago and conducted a computer search.
That introduced him to Dr. Eric Hollander, a prominent psychiatrist at New York’s Albert Einstein Medical Center and chairman of the ICare4Autism advisory council.
Hollander 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. He has experimentally been giving oxytocin to people with Asperger’s, causing them to more easily recognize emotion in spoken language and develop stronger social memory for up to two weeks after infusion. He is currently involved in a gene-first approach to new drug development and the study of biomarkers.
“The pharmaceutical industry is very good at developing new compounds and screening them in animals; it doesn’t do such a good job in screening them in human populations to find new indications,” he said.
Unlike Weinstein, Dr. Mike Snape – chief scientific officer for Autism Therapeutics Ltd.
in London – set up a small company to help his high-functioning autistic son, who is now 22. “I had planned to work on Alzheimer’s disease, but when my son was diagnosed, I left a big pharma company and went to a neuroscience firm on condition that I could focus on ASD,” he said. He is trying to redirect compounds tried on victims of Rett syndrome, a neurodevelopmental disorder, for treating autism patients.
Yaron Daniely, a former New Yorker and now an Israeli, set up a company called Alcobra that is developing drugs for central nervous system disorders. He is developing an existing drug, metadoxine, which is used in Europe, Russia, Italy and Thailand for attention- deficit disorder, for relieving some symptoms for ASD sufferers. Half to 70 percent of those with autism also have an inattention issue, so it could be very helpful, he said.
Better treatments will be developed and some day even a cure will appear, and ICare4Autism is eager to pluck them up, apply them for improving the life of patients and spreading the word from Jerusalem.