Autism is a reality for most parents today, whether it affects you or someone you know. The most recent statistics from the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network tell us that one in 68 children has been diagnosed with autism spectrum disorder (ASD).
Autism is almost five times more common in boys and affects all ethnic, racial, and socioeconomic groups.
But many times, autism doesn’t hit home until it affects someone you love. This was the case with Susan Levin, author ofUNLOCKED: A Family Emerging from the Shadows of Autism. Levin’s book paints a vivid picture of what it is like to be a mother to a child with autism. According to Levin, it wasn’t until she experienced “feelings of isolation, self-hate, and even moments of hatred toward her own child in response to his behaviors” that she began to desperately seek recovery.
Soon enough, Levin started to see remarkable changes in her young son Ben, providing hope for parents of children with autism everywhere. In honor of Autism Awareness Month, Levin sat down with Body Ecology to discuss the controversial topic on everyone’s minds: Is autism recovery even possible?
When was Ben diagnosed with autism, and when did you explore healing as a possibility?
Ben received an autism diagnosis when he was a month away from turning five years old. We were shocked, as none of his pediatricians had ever suggested that he had autism. Normally very optimistic and upbeat people, my husband and I experienced debilitating depression for several months. Sometime after, we discovered biomedical interventions (e.g., nutrition, cleansing, supplementation), as well as The Son-Rise Program® (the Autism Treatment Center of America’s autism treatment program), and everything opened up for us—and for Ben!
What helped you the most with Ben’s recovery, and what are the greatest changes you have seen in him?
Hands-down the most powerful changes have come from the two-pronged approach we implemented: diet plus home-based therapy. When we began our autism recovery journey, we had no contact with Ben, except for when he wanted something from us. Otherwise, he seemed about as interested in us as he was in the furniture—i.e., not at all. Ben’s language was unintelligible, even by me, his mom, and he had daily temper tantrums, which were exhausting for everyone in the family. Ben always seemed happy, but completely in his own world. It was like he was in his own perfect little heaven—we just weren’t invited in.
After the first year of biomedical work, with radically changed nutrition, the fog in which Ben lived seemed to lift somewhat. But when we began to implement The Son-Rise Program®, we saw even more meaningful changes. He began to look at me, to interact with me, and to listen to me. He began to be interested in others and to actually want to be with others. This was all very new. I will never forget the first time Ben actually looked at me and truly took me in. It’s in my book, in the section called “Emergence,” and I can never read it without welling up. When you think your child has no interest in you and suddenly they see you—really take you in—it’s a very overwhelming and wonderful experience.
Within several years of our work with biomedical interventions and Son-Rise, Ben fully emerged from autism. Today, he is one of the most self-aware, interactive, expressive, and compassionate children I know. He even writes children’s books about friendship—his favorite topic! He still struggles with attention issues and is behind his peers in many ways, more innocent or naive, perhaps, than other 12-year-olds because of his lack of social interaction in his early years. But he is eager to catch up, and I have no doubt he will.
How did The Body Ecology Diet help Ben recover from autism?
Being in the autism community, I constantly heard “miracle” stories about picky eaters (which is chronic in children with autism) who suddenly, when they start a particular “healing diet,” start eating lots of foods they never would (or could) eat before. We tried a number of these diets but always with negligible results. I often felt hopeless because our child did not have these miraculous, transformational experiences on any of these other diets.
When we started BED, however—Ben was suddenly one of “those” children, and he began eating many new foods, including ones like greens and fish, which he had never before been willing to eat. We were stunned. We also saw major energy increases. Ben had always been lethargic, and because many of the autism diets eliminate all grains, his energy dipped even lower when he was on them. On BED, however, Ben took immediately to the grain-like seeds (amaranth, millet, quinoa, and buckwheat), but without the addictive response he had experienced when he tried actual grains like rice. His energy zoomed up, and again, we were delighted.
Our whole family eats a largely BED diet, though to differing extents. We have all experienced healing. My daughter, 10-year-old Alina, who has never had autism but who suffered from a constant cough from post-nasal drip (read: turned-on immune system that never turned off), completely eliminated her cough on BED. I myself resolved years of chronic pain, as well as chronic fatigue through BED. My husband feels better on BED but eats off the diet as well, which works for him.
I am very excited to devote this summer to going even more deeply into BED principles and food plans to decrease Ben’s attention problems. I believe in BED because it’s balanced, energizing, and the food choices are broad enough to be livable, even for my kids. And I’m thrilled that Donna contributed a chapter on autism prevention to my book because it’s so important for families considering having children, and new parents as well, to learn how to take care of their kids.
How can parents know if their child is on the right diet for them?
Parents can only determine the right diet for their children through trial and error. Additionally, children change over time so that the dietary needs change constantly. Parents need to observe their children closely to see if a change to the diet is needed, and what kind of change. Additionally, today there are tests which can be very helpful, especially the Cyrex test for Multiple Food Immune Reactivity Screen, which tests everything from grains to protein to herbs and more. It’s an excellent gauge for families to start figuring out what their child’s sensitivities are.
I personally believe in bioindividual nutrition, which works from a premise that no two children have the same organic needs and challenges, and so every child needs to be seen as having a unique set of internal conditions. So one child’s healing diet may set up another child for terrible reactions. One example is the GAPS diet, which can be enormously high in histamines. My son actually became violent when we did GAPS because of the histamine problem (we think), yet it’s been enormously helpful for many other families. Other children have severe problems with oxalates or salicylate, and parents need to be aware of these potential landmines in order to give their children the right nutritional plan. I love working with families on these issues because there is so much we can do to help our children!
Again, for our family and with Ben, BED resolved many of our issues. When I work with families in my coaching practice, we explore symptoms and start very gently with the food. It’s one of the hardest interventions, but one of the most important and powerful.
What are the top three things a parent can do to support their child’s recovery?
1. Find support for yourself. Whether it’s someone like me, i.e., a parent who has gone through the journey already and can help you, or family, or your faith community, or professional trainers such as The Son-Rise Program® facilitators and teachers, you need to put the oxygen mask on yourself before you can help your child. This journey is usually long, non-linear, and frustrating, and it can be a life-saver to have someone in your corner cheering you on and helping you find perspective when things look hopeless. In a family affected by autism, everyone has special needs, not just the child. We all need compassionate and effective support. That’s why I started my business because I didn’t have anyone to give me that kind of guidance and support. Today, I want to be there for other families who need help like I did.
2. Explore the various autism healing diets and have your child assessed for food sensitivities and intolerances. The connection between digestion and brain function is one of the most meaningful issues in autism recovery, and if your child continues to poison his or her body with foods he or she cannot process, it will be much harder for him or her to recover.
3. Connect with other families affected by autism. I will never forget the first time I sat in a room with other families at the first Son-Rise Program training I attended. The teachers were talking about the “crazy” behaviors their own formerly-autistic children had done when they were still autistic and actually laughing about it. They talked about things that I would have felt ashamed to admit my child did, things like screaming, and hopping on one foot endlessly, and wiping poop on the walls. And they were laughing! All of the parents in the room were stunned, and quiet, until someone started to giggle, and then suddenly we were all laughing our heads off, years of shame and loneliness and isolation falling away. In that room together, we weren’t outcasts or social pariahs, nor were our children. We were together, sharing something difficult, and the camaraderie was radically healing. Today, thanks to social media and ironically thanks to the epidemic levels of autism, support groups of parents abound. Whether through Facebook or through local autism groups, families can find them and make the process much easier.
Susan, you’ll be at our booth for AutismOne on May 20-24, 2015, and you have a special gift for the first 40 people who stop by. Will you tell our audience what it is?
I would love to! I am thrilled to offer a free, signed copy of my book, UNLOCKED: A Family Emerging from the Shadows of Autism (Skyhorse Publishing, March 2015) which contains Donna’s Afterword on autism prevention, to the first 40 visitors to the Body Ecology booth who sign up for my email newsletter. My business, UnlockAutism, provides one-on-one guidance and coaching for families wishing to help their children recover through holistic interventions, as we did with our son.