Three Generations of ASD/Gut Dysbiosis: Healing with Good Food
[I am most appreciative for the chance to post the following interview/essay. To protect their privacy, Polly and Connor are not their real names.]
Polly has credibility of the purest kind. She healed herself and her autistic son using fierce determination and her version of the GAPS protocol--which alone is an achievement. But that is just a piece of her story, which began well before her son was born, when she worked in as a 1:1 aide for a student with Aspergers, and in a classroom with students on the higher-functioning end of the spectrum. Polly knows autism intimately also because her youngest brother's Aspergers inspired her to become a special ed teacher in the first place.
And yet, she says, “I felt very ill-equipped when I first started out [teaching]--we were dealing with obsessive behaviors such as compulsively picking at their skin till it bled, lots of kids with social difficulty and inappropriateness--and almost every single one of them had a really hard time with change. We did our best to keep the room organized and predictable; we drilled them on social skills/rules, created practice scenarios and tried to push their limits, and of course, learned to not take their rude and sometimes aggressive behavior personally.
“We had some success: our less-affected students with higher IQs usually went on to community college or university, but our students that were slightly more affected--with mostly normal IQs but with some significant cognitive gaps--almost always hit a wall at some point. It was as if there was nothing more we could do with them, either academically or socially.”
Polly's statement illustrates one of the reasons why children on the autism spectrum can appear so different from each other. Their “walls” might exist in different areas of development, and can be confused for “bad behavior,” when these kids are actually acting as well as they can within the limits imposed by their sick bodies and brains. In some cases parents or caregivers can compensate fairly well for these limits (helping to communicate for them, creating predictable, low-stress environments, etc.), but in other cases (as with violent behaviors), it's not always so easy, especially when a child just can't seem to move past a particular developmental stage or skill or behavior.
“At some point, it was like they had taken in all that they could take in,” Polly says. “And I now think that that might be the case when you're not doing diet in conjunction with some of these behavioral interventions... I don't know if I would ever go back [to teaching] in that capacity, because it was very discouraging.” This is a powerful thing to hear from a trained professional, because many people think that as long as you "get help/therapy early" (via early intervention programs, etc.), then ADHD/Aspergers/etc. kids are going to be just fine.
But Polly knew firsthand that while some kids develop enough skills to get by, and are able to compensate for their symptoms and lead somewhat normal lives, many others do not. Her brother was one of these children who was manageable at age 6, still manageable at age 8, but by the time he was 9, he was so out-of-control that he could no longer be taken out of the house. Polly's mom notes that her son had “...autism, asthma, allergies, hypoglycemia, and learning disabilities. [By age 9,when he was becoming quite violent] my son didn't have a future--it was death or an institution. I get this all the time: 'Oh, but my son's not as bad as your son!' Well that's true--but there was a time when my son wasn't as bad as my son. ...Just because a child is all right now, doesn't mean they will be all right in ten years or as an adult.”
Back when she was working full-time with autistic kids, neither Polly nor her mom had made the connection between diet and health. In fact, Polly's own health was gradually worsening. “I'm not sure what exactly was the straw that broke the camel's back for me, but I got mono right before I went to college, and the year after that, I began to have pretty severe yeast infections that would segway into bladder infections. I was drinking, living on pasta, fast food, unmotivated, in a total fog, and every time I went to the university clinic, they would throw a different antibiotic at me until finally, they wanted to put me on a prophylactic because I was getting one infection after another in succession. They couldn't figure out why, and I think they really did want to help me, but they simply didn't know how.
“Fast forward 3 years to my first pregnancy. My mom had just started stumbling upon the diet piece [as she began to try to heal Polly's brother using food, after all mainstream drugs, therapies, supplements, and protocols had failed], and we were both just starting to learn about organic foods, antibiotic-free meat, and eating in a more unprocessed way. So, I started eating meats and vegetables, _but_ I was also eating ice cream, lots and _lots_ of fruit, lots of pasta, potatoes, white bread, etc. Looking back, I know now that even though I had pretty good energy, I was in a brain fog much of the time. ...[Once, at] a wedding, I ate a huge dish of pasta and felt as drunk as I ever had on alcohol. I think the yeast overgrowth just must have been raging, but I thought these symptoms were fairly normal. At least according to my doctor, it was nothing to worry too much about.”
And then, Polly's first baby was born. “Having no basis for comparison, I didn't know that something was immediately wrong with my little one. Connor was so sleepy and reluctant to nurse, which didn't make for a great breastfeeding experience. I called La Leche League, and they told me to wake him up. I tried, but his poor little body was just struggling. He was a healthy weight for about the first 6 months, so all the doctors proclaimed him healthy as could be. However, besides the nursing being a huge red flag, I started to notice other signs.
“He wouldn't focus, wouldn't snuggle, his eyes darted all the time, there was no engaging him, he was very difficult. At close to a year, I tried solids, and he got even worse. He was losing weight, crying all the time, not wanting to nurse...it was nightmarish. He weighed about 17 pounds at a year old. My milk supply was extremely low, and I even got a period at 6 months while totally breastfeeding...that just shows you how little he would nurse, and I was completely exhausted - both from his demands and my own poor health. Sugar had a death grip on me, and even though I would eat relatively well at meals, I would also go hours just eating a few chocolates, or ice cream, or whatever I had on hand. One day, I called my mother, and we both had the same thought: [I should] start Connor on the Weston A. Price Foundation raw milk formula. For my mom, a former La Leche League leader who nursed all of us kids for 3-5 years, to recommend that, I knew that she was pretty concerned.
“_Immediately_ [after starting the formula] Connor changed. He began to gain weight, sleep, and smile. It was incredible. This was an amazing lesson to both of us that this baby was sick and probably had yeast and so did I. Around that time, I got pregnant with Baby #2, and I was determined to do it better this second time around. I still didn't know everything that I know now, but I did the best I could. I drank tons and tons of raw milk kefir and raw milk throughout the pregnancy. I ate lots and lots of meat and vegetables. I literally ate my husband under the table, easily eating a pound of ground beef at one sitting. I drank soup between meals. I made big milk and egg smoothies... I ate raw butter, yogurt, and I pounded cultured vegetables. I ate all the time, and I felt _great_!! I thought to myself, 'Wow, I feel so much better than I ever did _before_ I was pregnant!' I just didn't know how awful I'd been feeling,” Polly says, “until I didn't feel that way anymore.”
“It took a lot of hard work to get Connor to focus his gaze, talk and heal. He was born constipated and sick to a GAPS mother, but he is living proof that these kids can turn around... Toward the end of my second pregnancy, I transitioned Connor to GAPS intro, just doing boiled meat, veggies, soups, and cultured veggies. I cut out dairy, fruit, and grains for a long time. He started talking really soon after that - though relatively late - around 30 months. His language seemed to explode overnight. It was so exciting, I could hardly believe it. [It felt like, at that point, he was coming back] from the brink of autism.”
“My second baby, by the way, has been the total opposite. Yes, he got gassy and had rashes and detoxed along with me, but he has been healthy, happy, and thriving; he engages, focuses, and started talking before age two. It's such a contrast, and it taught my mom and me a lot about the phenomenon of my generation - the first generation to be completely raised on processed and fast foods and antibiotics from early on. I see so many concerning things when I attend some of the mommy groups that I'm in, and I really worry about these up-and-coming kids.” A lot of parents, Polly notes, just don't even know what "normal" kid behavior is, because so many children are dealing with at least some hyperactivity, anxiety, depression, and/or other health issues.
One remarkable aspect of Connor's recovery was that it happened in parallel with his young uncle's, and Polly got to learn about the healing power of diet right alongside her mother. And since Polly already knew firsthand that even with top-notch therapy, autistic and ASD kids rarely recover fully without dietary intervention, she and her mother finally decided to put their faith in Good Food. The dietary protocol was not a palliative treatment, they reasoned, or a coping mechanism, and it wasn't going to provide skills to compensate for symptoms (like many therapies try to do). The diet was not only going to remove specific allergens or add specific foods/supplements in order to obtain specific symptomatic relief (which is the goal of many “special” or “allergy-free” diets, supplements, and medications). Instead, by feeding nutrient-dense foods to their boys, Polly and her mom wanted these sick bodies and brains to heal _themselves_, from the inside out--and as Polly's mother says, “there are no downsides to eating good food!”
When Polly worked full-time with autistic kids, she got a first-hand look at some of their picky, horrendous diets. As she began to learn more about the gut-brain connection in her own son, and the ways that carbohydrates/sugars feed the underlying digestive disorder of autism, she remembered back to her students, and how the vicious feedback loop of diet would keep these ASD kids sick and getting sicker: “A lot of these kids live on sugar. ...This was one thing that I saw all the time. I remember one kid we had who would eat skittles obsessively, one after the other after the other. Another one would only eat rice--white rice--every day for lunch. You see it: they are fully sugar/carbs across the board. ...All of them were very limiting. And very ritualistic and obsessive.”
Healing takes Time. It took Connor a full two years before he caught up with his peers developmentally, even though his recovery started when he was only a year old. His uncle's healing took three years of strict dietary adherence until now (at age 14), he is developmentally indistinguishable from his peers and had lost all his psychiatric diagnoses.
Just taking some GAPS kids off their carbs can be a challenging task. “My son was like an addict being taken off of heroin,” Polly's mom explains. “And I'm a good step by step kind of person--[but] I had to battle french fries and McDonald's, and get him to bites of cauliflower.” But what are a few years of super hard work, when compared with the alternatives? “I no longer have a sick child, or a sick husband, or a sick daughter or a sick grandchild...It's so amazing what happens. It's not obvious at first. It's like the buds in spring, you don't even realize they're coming, and then one day you walk out and you see the daffodils and tulips--it's like that, it's hidden away until all of a sudden you realize, oh my goodness, my son is not how he used to be. He is a new person. He is the person he was supposed to be but was never able to be!
“You've gotta believe that this nutritional protocol will revolutionize health and turn the body upside down, and we will conquer the infections: our kids have viral, bacterial, and fungal infections, and deficiencies. It's no wonder they have meltdowns and don't feel well! [So many people, even adults] go through life not feeling well! But as the body heals, the joy comes, and the steady moods come. Hang in there--that's my advice. No wonder Dr. Natasha tells us 2-3 years _if we're lucky_ . On the first audio when I heard her speak, that's what she said: 'two to three years, _if you're lucky_.' If you look at it that way, stick with it--well, we're at three years of solid strict diet, and my son now every day does something amazing in his life. ...And what is the downside to eating good foods? I just don't see any. I don't see any downside in giving the body good food.”
Polly agrees. “The GAPS diet is an incredible time commitment, and sometimes you just want to throw in the towel and drive over to McDonald's, but when I see the difference in my kids vs. the hyperactivity, OCD, anxiety, allergies that are _so_ prevalent out there, I know that it is all worth it. We all owe it to our kids to do this for them. And, it's really a small price to pay in the end.”