A local family’s experience with the disorder
River Robbins didn’t make eye contact for the first 10 years of his life. Not even his mother, father, grandmother and grandfather—all of whom help to raise him and his twin brother, Bodhi—knew the joy of looking into his beautiful blue eyes. Until recently.
“River had not made any eye contact with anybody, ever. His eyes might have, in passing, grazed over a person but there was no connection,” recalls River and Bodhi’s grandfather, John Robbins. “This particular time, about five months ago, something happened. Our faces were close to each other’s, and we found each other’s eyes and just stared. For about a minute. It hadn’t happened for even two seconds before.”
The boys’ grandmother, Deo, watched in amazement. “I remember watching it happening and I didn’t want to talk or even breathe because I didn’t want to break the spell,” she says. The “soul to soul” contact John remembers making with his grandson a few months ago was a breakthrough for the Santa Cruz County family.
Both twins, now 10 and half years old, have autism, a pervasive developmental disorder that manifests with a number of symptoms, including a lack of eye contact. Bodhi, like River, had hardly made eye contact until this year.
“[Not making eye contact] is very common in autism,” says their father, Ocean Robbins. “Autism can be caused by many things, but one theory that makes a lot of sense to me is that it can be a product of sensory overload.”
Unable to filter the barrage of information surrounding them—sounds, sights, smells, activity—they “become very exclusive with their consciousness, by settling into familiar patterns and routines. They create their own inner world where they feel safe,” Ocean says. In addition to adopting obsessive, repetitive behaviors (called “stimming”), avoiding eye contact is another way autistic children retreat from an overwhelming world.
The fact that River and Bodhi now make eye contact with others on a daily basis could mean they are starting to emerge from their isolated inner worlds—a milestone the family believes they reached thanks to their work with The Son-Rise Program. Since beginning with the program five months ago, the Robbinses have seen a twentyfold increase in eye contact. “When they have a conversation with us, they look us in the eyes,” Ocean says. “It’s so beautiful.”
SONS RISING Twin 10-and-a-half-year-olds River (left) and Bodhi Robbins (right) have autism. They are making strides with The Son-Rise Program, a treatment method through the Autism Treatment Center of America.
Considered somewhat unconventional compared to the prevailing autism treatment methods, The Son-Rise Program focuses on some simple, time-tested tenets, such as love, acceptance and hope—principles the Robbins refused to face the twins’ autism without.
“For me, one of the core philosophies of Son-Rise is that we inhabit a world made up of our own beliefs,” says Michele Robbins, the boys’ mother and wife to Ocean. “If our belief is that this is a tragedy, then that’s how we’ll experience our lives—as a tragedy. If we believe we’re in the midst of a miracle and that our unique and incredible children are unfolding in magical ways, it creates a very different orientation. It’s so freeing, so liberating, so relieving to not try to have to make the world or my children to be any different in order to be happy.”
A Rocky Start
Ocean and Michele felt the call to become parents as day broke over the new millennium—“a moment when I think a lot of people felt the dawn of new possibilities in the world,” says Ocean.
Six months later, they were pregnant, not just with twins, but also with expectations.
Ocean’s high hopes for his children stemmed from his own precocious upbringing: his grandfather, Irv Robbins, founded ice cream chain Baskin-Robbins, and his father, John, is the acclaimed author of such inspirational bestsellers as “Diet for a New America” and “The Food Revolution.”
Naturally, the itch to do “big and great things” gripped Ocean from an early age, and he was organizing peace rallies by the age of 7, started a natural foods bakery at age 10, and founded the social change nonprofit Yes! when he was 17 (he remained at the helm until stepping down earlier this year). Michele, too, has spent the last 17 years working side by side with Ocean to “create the next generation of Mahatma Gandhis and Martin Luther King Jrs.”
“My belief at that time was that parenting was an act of love, and selflessness and service, and also that it was a strategic social change investment,” says Ocean. “I felt that children who are raised with consciousness and love and good values can be a real contribution in the world.
“I got off to an early start, and so I figured our children would be exceptional in a kind of brilliant way that would generate some worldly acclaim,” he adds. “That was my expectation.”
He dreamed of having children who would be “changing the world by the time they were out of diapers.” Instead, his twin 10-and-a-half-year-olds are still in diapers.
Michele’s expectations were less far flung, but she, too, had treasured visions of how her boys would be brought into the world.
“I had a lot of expectations for a beautiful, sacred home birth, with candles, and having the most immense love and beauty and feelings of motherhood and sweetness,” she recalls. “It turned out very differently.”
SURF’S UP The twins watch surfers at Steamer Lane. Photo courtesy of the Robbins family.
Michele unexpectedly gave birth to the boys in a hospital at 31 weeks. More than a month premature, River weighed 2 pounds 15 ounces and Bodhi weighed 3 pounds 5 ounces.
Instead of the peaceful, healthy homebirth she’d dreamed of, Michele watched as her babies were swept away to the Intensive Care Unit before she could hold or touch them. It was an hour and a half before the new parents saw the boys, and six weeks before they could bring them home from the hospital.
“It was the most traumatic experience,” says Michele. The trauma continued once the Robbinses finally took the newborns home, as the babies struggled to nurse and screamed without pause. “There was no time or space for me to feel the ‘Oohhh, I’m a mother’—it was just crisis, drama, and surviving,” remembers Michele.
Although there were signs that the boys possibly had developmental problems as early as their first six weeks (they had trouble sucking, breathing and swallowing), the family decided to concentrate on the present moment. Ocean’s parents, John and Deo, “turned their lives around to support us,” says Ocean, and for the first several years of the twins’ lives the entire family lived under one roof (they now live in two separate houses on the same property). Doctors warned them that, like many premature babies, the boys would grow up to be touch averse. The family didn’t accept this diagnosis. Instead, they held the boys 24 hours a day in “kangaroo care.”
“We weren’t allowed to touch them for those six and half weeks,” says John. “They were in incubators; instead of being welcomed with warm human touch, they had received all of this medical probing, needles and such. We were told we had to live with the fact that they would be touch averse. I’m sure that the doctor who told us that meant well and was trying to help us accept this situation and not feel guilty, but what I felt when I heard that was ‘Thank you for sharing but I don’t accept that diagnosis.’
“We began to hold them 24 hours a day—between the four of us, each of the boys was in skin-to-skin contact 24 hours a day for over a year, close to two years. They were touch averse. They were frightened. They would scream for 20 hours a day. For years and years they just screamed and screamed and screamed and we held them—wearing ear plugs.”
Today, River and Bodhi are embraceable kids. Their parents and grandparents cuddle, hug and kiss them, and John often wrestles with them. “They aren’t touch averse by any stretch of the imagination,” he says. “And, a lot of times when you can’t reach them in any other way, touch is the only way we can make contact with them.”
Awakening to Autism
Such warm and affectionate dispositions aren’t typical of children with autism, which confused the slew of doctors the Robbinses saw over the years. After a decade of various doctors, specialists, dietary regimens, therapies and tutoring, the jury was still out on what exactly the boys were dealing with.
“We knew they were special needs,” says Ocean. “But we had a number of doctors tell us they didn’t think they were fully autistic, for reasons we now believe have to do with the parenting and lifestyle choices we had made.”
FAMILY TIES [Left to right] River, Michele, Bodhi and Ocean Robbins.
Last fall, Ocean and Michele enrolled the boys in school for the first time. Although it was a small, private school, and they were in a second grade classroom instead of with their peers, “the social environment was totally overwhelming,” says Michele.
River and Bodhi lasted two and three months, respectively, before their parents pulled them out of school. This brought about more disappointment for the Robbinses.
“I never wanted to think about the future very much [before that],” Ocean says. “In those 10 years, we were pretty much just focused on the present. We didn’t want to ask ourselves what they’d be capable of down the road. Will they ever drive a car? Will they ever have jobs? Will they ever be able to get married? Will we have to take care of them for the rest of our lives? What will happen to them when we die? How will we support them financially for our whole lives if they can’t do anything for themselves? We didn’t want to ask those questions. It was terrifying, and heartbreaking, and we had no ability to answer them anyway. So we decided to stay where our power was—which was in the moment, where each moment, moment by moment, we were making it through.
“After we pulled them out of school we had another round of giving up on dreams,” he continues. “Because we thought, as we approached their 10th birthday and they were in school, that we had reached the crest of a hill and it wasn’t all on us now to shepherd them through life—now they were in school, where a whole community could help them on that journey. We thought that contact with their peers would be good for them, and inspire them to do things—like get potty trained—that we hadn’t been able to get them to do. We thought that it would motivate them to read and write, because they wanted to be like other kids. We thought they were kind of getting on the train—they’re behind their peers, but they’re on the train to ‘normalcy.’ When we saw that school didn’t work for them, we faced for the first time, full on, the realization that our children were not just recovering from a traumatic start, but also had some issues that the probability was would be lifelong.”
With the boys back at home, and River exploding into violent outbursts 20 to 30 times a day as a result of the stress he felt from school, Ocean and Michele knew they had to rethink their approach. “Now we were starting to think, what if he’s doing this when he’s 15 or 20? And so from that perspective we realized that we weren’t on the train, and we felt that we had to take really seriously what we were doing then,” Ocean says. “Not just to cope and make it through day by day, but that we had to be very proactive.”
A few months later, the answer they were looking for came to Michele early one morning, around 5 a.m., as she read a book in the bath.
“I was reading a check list [of autism symptoms], and thinking ‘There is no question here. My kids have autism,’” she says. “There was a strange feeling of relief, but also this anger and frustration of ‘Why hasn’t anyone told me this before?’ We’d raised this with people and they’d say, ‘Oh they have a lot of characterizes in common with autistic children but they aren’t autistic.’ Because autism is considered such a doom-and-gloom sentence, I believe they didn’t want us to feel helpless and hopeless. But ultimately it was very helpful [to know] because once I began to look at it through the lens of autism, it opened up a world of resources.”
Soon after, the family visited a pediatric neurologist who confirmed that it was, without a doubt, a case of full autism for both boys.
“We’d felt so alone. So alone,” says Michele. “They have developmental delays—OK—that explains certain things, but it didn’t explain everything. Autism was definitely a bigger, more holistic picture.”
Re-energized, she and Ocean dived head first into researching autism and its various treatment methods.
“The first thing you learn about autism on the Internet is that the conventional medical belief is that it’s hopeless,” says Ocean. “By which I mean that the conventional belief is that you can do a little bit to improve the outcome, and that you can train kids to be a little less difficult and more cooperative, but the bottom line is that it’s a lifelong sentence and there is no cure. The second thing you learn is that there are gobs of people who have their success stories, and they all have a product to sell and they all have some seminar to offer and some thing you can buy.”
Needless to say, the onslaught of information, options, and silver bullet claims proved overwhelming for the optimistic parents. “But we also knew that in this haystack, there was a needle somewhere,” says Ocean.
The Son-Rise Program
The needle in the haystack turned out to be The Son-Rise Program (see below), which the family had been peripherally acquainted with already. “What we liked about it was that it was good stuff, whether or not it provided a cure,” says Ocean.
Barry Neil Kaufman and Samahria Lyte Kaufman founded the program in 1983 as a part of the Autism Treatment Center of America. The two developed the Son-Rise method to help their son, Raun Kaufman, overcome his own “life sentence” of autism. The fact that the program dismisses the widespread notion that autism is hopeless was especially attractive to the Robbinses.
In the Son-Rise view, autism is a relational disorder, not a behavioral disorder. As such, it emphasizes building close personal relationships and creating an accepting, safe environment for kids to be themselves before moving into academic and behavior work.
River has one-on-one Son-Rise time with one of the family’s volunteers.
The program teaches that autistic children engage in the behaviors they do in order to make the world—which is overstimulating to them—a safer place for themselves, and that the first step to helping them is to begin to understand the world from their perspectives. With the parents as the primary teachers, Son-Rise promotes “joining” autistic children in their world. It’s a model of acceptance—accepting a child for who he or she is, instead of demanding that he or she change.
“A lot of times in a lot of therapies for autistic children they will try to change and stop the repetitious behavior that they often do,” says Deo, the boys’ grandmother, who attended the family’s first Son-Rise training workshop with Michele early this year. “I learned to join with them and learned how to be with them in it, to the point that they start to feel a connection. Often if I am doing that they will crack a huge smile, or sometimes even correct me if I’m not doing it right.”
Son-Rise utilizes a child’s obsessions to work on building relationships or healing symptoms—for example, River and Bodhi love country music, pop stars (Lady Gaga especially) and, above all, surfing. They stand on the bed, with the quilt as the waves, and pretend surf for hours at a time—acting out surfing competitions and role-playing as their favorite pro surfers. When Certified Son-Rise Teacher Carolina Kaiser first visited the family from Son-Rise headquarters on the East Coast, she pulled up her own quilt across the room and started “surfing,” too. “We did that until [one of the twins] tells me he’s interested in playing together,” Kaiser explains. “My schedule doesn’t come first, his does.”
River and Bodhi’s love of surfing also provides a way to establish more eye contact. “They love to look at surfing magazines,” Ocean says. “So right now, for example, the only way the page gets turned is if a boy looks in my eyes and I shout ‘Magical Powers!’ and it gives me the ‘magical powers’ to turn the page, and we go to the next one. Instead of doing a very separate thing, just staring at pages in a magazine, we’re actually in contact with every single page. And they light up every time they give me the magic powers, because I say it with such enthusiasm that it makes it fun for them to look at me.”
The program falls on the opposite end of the spectrum of autism treatment methods from the most common form, Applied Behavior Analysis (ABA), which focuses on behavior modification.
WORKING TOGETHER Bodhi with his mom, Michele, during Son-Rise time.
“It says, if every time they do X bad behavior, they get Y punishment, eventually they’ll stop doing that behavior. And every time they do a certain positive behavior they get a reward, they’ll end up doing that positive behavior,” explains Ocean. “So you may end up with kids who behave a little better over time. [And] there have been plenty of times along the way where I’ve said, ‘I’ll take better behavior even if it’s not coming from the core of someone’s being. I’m tired of having a kid punch me’—you know?” He laughs, shaking his head, before continuing to say that the results the family has seen through Son-Rise (which has yet to be deemed scientifically-proven, although anecdotal stories abound) have been deeper than surface level behavioral improvements.
“I care more about how happy they are, how much love they can feel, than how they measure in some test score,” says Ocean. “So it’s not that I don’t care whether they can hold a job or live independently—it’s that I believe by focusing right now on love and human connection, that that’s how that will happen. I feel that the range of possibility is bigger than it looked a while back for what could be for them.”
The family has built their own Son-Rise program here in Santa Cruz, with a team of eight volunteers that help give River and Bodhi 20 to 30 hours a week, each, of undivided one-on-one “Son-Rise time.” Volunteers for the Robbins family can receive Marriage and Family Therapy credit, as well as internship credit through the nonprofit Autism Spectrum Disorder Climate Foundation for the work.
In addition to improving eye contact, Ocean says they’ve seen a 95 percent drop in violent outbursts, increased verbalization and flexibility, and a dramatically improved sibling relationship since adopting the Son-Rise lifestyle. Michele, beaming, recounts a recent day spent at the beach: in the past, the feel of the sand and the sounds of the waves was enough to catapult the boys into a meltdown. But, this summer day, no sooner had their wetsuits been zipped up than the boys were bolting into the water, bodysurfing in the waves, and wiping out—with smiles on their faces all the while. “In and of itself it was a small step, but in the big picture it was huge,” she says.
It’s All in the Attitude
If the boys weren’t making such progress, Ocean and Michele would still be happy with what Son-Rise has done for them—namely, helping them find happiness and beauty in the “brokenness” of life.
“That principle that we can be happy, regardless of what is happening in our environment, is absolutely core to The Son-Rise Program,” says Ocean. “It’s using autism as a doorway toward joy, fulfillment, spiritual and personal growth, and living in a good way—with all kinds of ripple insights that affect everything we do in the world.” (Ocean calls the twins his “spiritual teachers.”)
Ocean tells several stories that involve River smearing poop around the house or on his brother—another common behavior among autistic children, and, understandably, one that tested the parents’ patience. But, imbued with Son-Rise energy, Ocean approached River’s last fecal-spreading episode very differently: “The last time, knock on wood, that River smeared poop anywhere was all over the window one morning. I came in, and instead of chastising him or forcibly pushing him away, I went over and did something really unusual. I drew a heart in the poop on the window. River’s response to that was to look at me with the biggest smile in the whole world. He was totally shocked. He said, ‘I’ll go get cleaned up now!’ and he went right into the bathroom to get cleaned up.”
As River made babbly, non-word sounds in the tub, and Ocean wiped feces off of the window, he thought back to his twentysomething self who had such high expectations for his life and his children. “I had this thought to myself: if I had known 10 years ago that here I would be, cleaning fecal material off of the window, while my kid was making these babbly, autistic sounds in the tub, how would I have felt? And I thought, wow, I would’ve felt so depressed inside and horrified. But if I had known that I would be cleaning this off the window, with him making those noises, and I would feel at peace, joyous and full of gratitude for life—how would that have felt? It would’ve felt totally incredible.
Grandparents John and Deo Robbins pictured with the twins and their parents.
That’s when I realized that joy is fundamentally not about things going the way you want them to go. It’s something much deeper and much more precious, and much more in our power. I was feeling totally at peace, I was connected to my son and life was OK. And I felt then that The Son-Rise Program was maybe changing my life more than my kids’ lives.”
Indeed, parental attitude and outlook is at the core of Son-Rise’s mission. According to Kaiser, who’s been a Son-Rise teacher for 10 years and worked with more than 800 children, “the majority of the work I do is counseling—interpersonal [work] helping parents feel better, and learning that they can feel better, that this isn’t a lifelong terrible thing, that we can find ways to be optimistic. And that will help our kids.”
For Michele, being the mother of two autistic children is like living in an adventure movie—one not unlike The Lion, The Witch and The Wardrobe, which she says she recently watched with Bodhi. “It’s inspiring for me to experience my life that way—that there is a series of quests and each one I pass, I am given these gifts to get through the next ones,” she says. “The ultimate triumph of good and love—that’s a part of the adventure I create with my children. Can I choose love now with poop smeared on the floor? Can I choose love now when my child just bit me? I have moments when I feel weak and I’m not able to; but that helps me to see the difference. To see how it feels when I choose love, and see it and feel it—OK, here’s a test, how do I rise to it? It creates a powerful momentum to growth and possibility.”
The whole experience, says John, has been “a tremendous crash course in unconditional love.” Or, as Ocean puts it, a lesson in “loving, just because.”
“My children are teaching me what unconditional love really means, and how to love people the way they are—and to love the world the way it is,” he says. This lesson has seeped into his career work, as well: “my social change work is coming from a different place. I’m not wanting to make a difference because I need to do it in order to have self-respect, but because I’m motivated by a genuine force of love and compassion and connection.”
Ocean will be teaching a college course on peace and justice at Chapman University in Orange, Calif. this coming school year, and continues to speak and facilitate workshops and events all over the world—from Thailand to Jordan. What he’s learned from autism finds its way into his speeches and workshops. “My hope is that as we shift from seeing children with autism with eyes that would pathologize, judge and distance, to eyes that would love, and embrace, and seek to understand, that we can learn something about human nature and about working together across divides that may be necessary to our collective survival,” he says.
John, an acclaimed environmental and health expert and author, has started drawing parallels between autism in people and autistic traits in society as a whole. “In my interactions with and attempts to heal and nurture River and Bodhi, I feel like it’s the same work as trying to help our society, which is so autistic, so disconnected,” he says. “It’s looking at what do we need to do to find our emotional center and our capacity to connect in a compassionate way. I’m facing the autism of our times.”
The twins at a surf lesson. Photo courtesy of the Robbins family.
Michele has started working as a doula, or childbirth coach, and hopes to do much more of it in the coming years. She and Ocean will be hosting a free community event on Thursday, Aug. 25 to share more about their family’s experience and The Son-Rise Program with their Santa Cruz neighbors (time and location to be announced).
“It’s engrained in our beings, it’s who we are that, anything we learn or become, any gift we are given, we have a desire to share that,” she says. “We always look at how we can give to the world to make it more of the place we want it to be. We’ve been so gifted by Son-Rise, and we want to share that.”
They hope that anyone who is interested, whether or not they deal with autism, can learn a thing or two from the workshop. “We want to share the inspiration that we’re learning with everybody, because I think these principles cut across the whole journey,” says Ocean.
And for local families who are navigating the frustrating world of autism, they hope their story of learning to “love just because” can, if nothing else, prove that nothing—not even autism—is hopeless.
“For us, the question is how far the miracle will stretch—but I know we’re creating one,” says Ocean. “So I don’t know if River and Bodhi will do all of those things I said earlier—if they’ll have jobs, or partners, and live independently—I don’t even know when they’ll be pooping on the potty, but I do know that already we’re seeing dramatic changes in our quality of life, in our joy, and in how fun it is to be in our house.”
The Robbins family is holding a free public introduction to their Son-Rise program in Santa Cruz on Thursday, Aug. 25. To learn more about that event, their program, their work, and other useful resources, visit oceanrobbins.com/twins.
Photos by Keena Parker
• Autism is a pervasive developmental disorder, first diagnosed in 1943
• One in 110 American children have autism, according to the Centers for Disease Control and Prevention. Based on this figure, there are about 431 children younger than 14 with autism in Santa Cruz County.
• Autism is four times more likely to occur in boys (CDC)
• An estimated 730,000 Americans under 21 years old have autism (CDC)
• If one identical twin has autism, there is a 60 to 96 percent chance the other will, too (CDC)
• Studies have estimated the lifetime cost of caring for an individual with an Autism Spectrum Disorder to be $3.2 million (CDC)
• The number of California children with autism rose from 17,508 in 2002 to 59,690 in 2010, according to the Lucile Packard Foundation for Children’s Health. “Part of the reason autism rates have grown so astronomically in this last generation,” says Ocean, “is because they are diagnosed more freely, and more and more things are being put under the autism umbrella.”
• There is a widely circulated fact that the divorce rate among parents with children with autism is 80 percent—much higher than the national average—but a study by the Kennedy Krieger Institute in Baltimore claims to debunk this, finding the divorce rate among the subgroup to be 64 percent (compared with 65 percent in other parents they looked at).
• However, many studies do prove that parents of children with autism deal with much higher levels of parenting stress. A study conducted at the University of Wisconsin-Madison found that mothers of adolescents and adults with autism have comparable stress levels to combat soldiers. Another study, this one by the University of Washington Autism Center, looked at mothers of children with autism versus mothers with children with other developmental disorders, finding that the former have much higher levels of stress: “The parents in the autism group had higher levels of parenting stress and psychological distress compared to moms of children with disabilities without autism,” the center’s Associate Director, Annette Estes, told the New York Times in 2009. (The results about fathers was too partial to be conclusive, but suggested they are in the same boat.)
The Son-Rise Program
• Began in 1983 as a project of the Autism Treatment Center of America.
• Barry Neil Kaufman and Samahria Lyte Kaufman founded Son-Rise after their son, Raun, was “sentenced” to a life with autism. They devised the program and, years later, Raun graduated from an Ivy League school and went on to be the CEO of Son-Rise. He is the author of 12 books including “Son-Rise: The Miracle Continues.”
• The program has worked with more than 22,000 families in 66 countries.
• Offers “highly effective educational techniques, strategies and principles for designing, implementing and maintaining a stimulating, high-energy, one-on-one, home-based, child-centered program.”
• Key principles include: joining children instead of trying to change their behaviors; utilizing parents as the primary teachers, therapists and directors of their own Son-Rise program; and having the home be the safe, nurturing setting for working with the children.
• Teaches that autism is not a behavioral disorder; rather, “it is a relational, interactional disorder. At its core, autism is a neurological challenge where children have difficulty relating and connecting to those around them. Most of their so-called behavioral challenges stem from this relational deficit.”
• The focus is first on love, acceptance and joining, then on educational, academic strategies.
• Differs drastically from the conventional autism treatment method, Applied Behavioral Analysis (ABA), which focuses on either rewarding or punishing certain behaviors, promotes structure, uses professionals as the key teachers rather than parents, and mostly focuses on academic skills.
• Includes a lot of attitude work for parents.
Visit autismtreatmentcenter.org for more information about the program.