When Elaine Hall learned she would be unable to bear a child, she and her husband decided to adopt one from overseas. In 1996, they traveled to an orphanage in Russia, where they adopted a nearly 2-year-old boy named Nial, whom they renamed Neal and brought home to Los Angeles. There, Hall worked as an on-set coach for child film actors. When Neal began to show significant development problems, his parents had him tested, and received a diagnosis of severe autism and mental retardation.
In her new book, “Now I See the Moon: A Mother, a Son, a Miracle,” written with Elizabeth Kaye (HarperStudio, 304 pages, $20), Hall, 53, describes the challenge of raising a child whom others urged her to send away, and discovering and helping him to realize the potential that lay within.
Hall’s marriage was one victim of the pressures Neal’s condition brought to bear on her life; her ability to work for many years was another, as she began to devote her life exclusively to his care and treatment. Her personal journey coincided with a period of dramatic advances in the understanding of autism and in its treatment, and so in many ways her work with Neal had a cutting-edge quality to it.
Though the state of California was obligated by law to provide proper educational resources for disabled children, Hall often found herself battling school authorities over his needs and abilities. Sometimes Neal, when placed in a situation he was unequipped to contend with, became violent, forcing his mother to seek new ways to help him and leading to significant setbacks. All of this is described with great candor in the book, which is most powerful in the way Hall details the incremental process by which she developed methods of reaching her son, and helped him overcome his nonverbal limitations so he could make his feelings and needs known.
Eventually, Hall founded The Miracle Project, a theater program in L.A. for autistic young adults and their families that involves the writing, rehearsing and performance of original musical plays. A documentary film about its undertaking, “Autism: The Musical,” won two Emmy awards, and Hall is now involved in helping communities around the world set up similar projects. Haaretz spoke with Elaine Hall by telephone from her home in Los Angeles.
The period you lived through and describe is one in which the occurrence of autism seems to be on the rise, and also the understanding of what exactly constitutes the disorder seems to have changed significantly.
Yes, no one really knows why, but more and more people are being diagnosed with autism. Part of it is the development of the “spectrum” describing the full range of autism symptoms, which means that more adults are getting an understanding for the first time that they have autism. I wanted people to understand the process [of dealing with autism]. It’s not a behavior disorder, it’s neurological. I think when you have a child with autism, you become a family with autism, and I wanted to get that across.
Is there something that all cases of autism have in common?
At the most basic level, it means having challenges with sensory processing, with speech and language, and with social communication − all to varying degrees. My son is non-verbal autistic, but there are also autistics who are highly verbal. Although this is in no way a scientific definition, one common denominator I have observed is an extreme sensitivity.
So, if I grew up thinking that autistic people were unable to communicate because they were oblivious to the world outside them, you’re saying that they actually withdraw because they suffer from a type of sensory overload?
Exactly − withdrawal is an extraordinary coping mechanism for over-stimulation. There are many things that are attributed to autism that I just haven’t experienced. For example, the idea that they can’t be empathic, or that they’re not emotional. I find the exact opposite to be true. I’ve worked primarily with kids and teens, and they are the most emotional people I’ve ever known. If the neurological system is so sensitive − and this starts at a young age − that just to cope with the world, you need to build barriers or protection, then to the outside person it can appear that you don’t want to communicate or can’t share your feelings. But I’ve found that, given the right environment, they can be nurtured.
I have had kids arrive at my class who fight, scream, kick and who are completely absorbed in their own world. But within a couple of months, they’re singing, dancing, relating to other kids. And we’re not doing anything unusual, just giving them a safe place to be themselves.
There’s a lot of disagreement, often expressed quite bitterly, about the causes of autism, for example over the fear that the mercury present in some inoculations may be responsible. Where do you stand on this issue?
I understand that there are many many possible causes: Is it the toxicity of our environment, maybe something the mother ate during pregnancy, genetic causes, a weakened mitochondrial system? Is it the vaccines? I have my own feelings about it, but I believe that whatever the cause, my mission on the planet − this time around − is to be of service to the children and their parents right now. How can their lives be more normal, how can we educate the “typical” world to be passionate and understanding? When I put on my philosophical cap, I sometimes think: What if these teens and young adults are here on the planet to be our teachers? And the world is too loud and too toxic, and they’re our canaries in the coal mine, and they’re here to tell us that we have to stop what we’re doing and to teach us to be here for the moment? They’re God’s messengers right now.
You live in the world’s wealthiest society, and have had extensive resources available to you. What happens to people in communities that lack the money to provide proper care to autistic children?
There’s a woman named Areva Martin who has started an advocacy program to teach lower-income families to advocate for themselves. Now, there are some states that are embracing insurance to cover the costs. I can remember spending hours and hours on the phone just trying to get my insurance company to cover therapies. But I also learned that there are all kinds of low-cost ways to deal with the problem. Had I just gotten on the floor with Neal, or just done my own speech therapy ... Most of the help I have had has been from volunteers. I enlisted the help of teens and of people from my synagogue, and encouraged them to join my son’s world. Anyone can learn how to get into the world of a child.
There are countries all over the world that have no therapies. I was blessed to be able to speak at the UN, and a man from Africa came up to me and told me about societies where children with autism are forced to live in a hole. There are civilizations that see them as having the evil spirit. So, this is a civil rights issue, too.
Now that your work has become known around the world, how are you dividing your energies?
I have a home-base at Vista Del Mar Child and Family Service. I’m the director of the Vista Inspire program, which serves as a home for Miracle Project classes for all ages, and we’re also creating an after-school program, sports and recreation; a bar and bat mitzvah program; and a lifelong-learning program, for kids who have already had their bar mitzvah. And I’m working on another book for educators, about how to use the methods I’ve learned, in the classroom.
After the film was released, we received 7,000 requests from all over the world from people who wanted to establish Miracle Projects in their communities. I want to establish the template so that they will be able to call me, I can send them the information, and then make the project happen.
Does a Miracle Project necessarily have to involve a theatrical project?
The philosophy can be used for anything. What we are doing is reverse mainstreaming, by which we bring “typical” kids in from the world to be with our kids. This can be done with sports, with academics. First we bring the typical world into our world. Then our kids can go out into the world.
How has all of the attention affected Neal’s life?
He’s such a cool kid. He says that we are “messengers,” and he says, Mom, do your work. This year, sign language has come in for me. With sign language, he’s able to immediately be able to come into the world. People say: He’s so calm, what medication is he on? I say, he’s not on medication, he’s just able to express himself. He loves life, has friends and loves living at home. Loves to hike, loves the ocean. Last year he started learning how to surf. He had a crush on a girl. I was so afraid she was going to break his heart. But my son’s coaches say it’s fine for his heart to be broken. He’s 16.
What do you think are the limits for him? How do you picture his adulthood?
That’s a necessary question. It used to be that they thought you were stupid if you were non-verbal, and we’re the first generation [that has the understanding and tools to challenge that]. To date, I have not found the right program for Neal. What do I create for him? Maybe a situation of 24/7 watchfulness but independent living and work. Would he get married? I think so − he’s really cute. I imagine him with a codependent woman. The CEO of Vista Del Mar is enthusiastic and proactive in supporting transitional programs for our students with autism.”
Why does it seem like so many Jews are involved in this work?
Jews are always going to be outspoken, we’ll always be the loudest ones. But, 14 years ago [when Neal was first diagnosed with autism], the first place I called was the Jewish Federation, and there was nothing available. Now there are so many programs, and they’re all competing for funds. And although Vista Del Mar, where the Miracle Project is based, is Jewish-run, the project is secular. And we have invited non-Jewish people to our lifelong learning program. I believe that spirituality is such an important part of our lives, seeing your life as a spiritual journey.
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