We are in the throes of Autism Awareness Month, and as I sort through my autism information, experience, and anecdotes to share as a way of contributing my own spin on autism awareness, I think of all those times I tried this, that, and the other thing to try to ‘cure’ my son of his autism. To rescue, remedy, and reclaim him as the healthy, happy, typically developing child I envisioned.
Oh, the things I wasted my money on all those years ago before I realized that autism was here to stay and there was nothing to ‘cure,’ really.
People would ask, “Have you tried … (fill in the blank)?” Not yet, but I will once I’m done trying this … (fill in the blank). Things like zinc skin creams, Epsom salt baths, and mineral supplements to help his body eliminate toxins and free radicals from his body; vitamins A through Z – after all, my child was a kid with “a starving brain” according to one book I read and eventually threw away.
None of that stuff worked. But I was still not defeated. There were loads of other ‘cures’ still to try.
Then there was the gluten-free/casein-free diet, which actress Jenny McCarthy touted in her autobiographical book had ‘cured’ her son of his autism, that just made all the rest of us moms who tried it and didn’t ‘cure’ our kids’ autism feel like failures and secretly hate her.
The GFCF diet, the eliminating of all things dairy and gluten-based (breads and grains), was the latest thing in the early 2000s.
One article I read – probably around 2:00 am one sleepless night – where a mom’s son magically said “Mom” for the first time at age six one week into the diet was enough to send me to the health food-section of the store to slam down my credit card and pay $10 for a gluten-free loaf of bread, $6 for a box of GFCF crackers, and $8 for waffles.
Gastrointestinal issues such as acid reflux and constipation correlate with autism. I saw no change in my son’s GI issues after two months of the diet, and I saw none of the ‘behavioral’ changes some were reporting, such as a decrease in repetitive self-stimulating behaviors and an increase in verbal abilities.
I spent a fortune on food, ultimately tasted and immediately wasted by the 2-year-old who was spiraling into weight loss because none of the food I was making tasted good enough for him to suffer such constipation and acid reflux.
But there were other things still yet to try. There were digestive enzymes. Cod liver oil. Anti-fungals. 5-HTTP. Melatonin.
Some other parents tried chelation and recommended it for removing the heavy metals built up in the body, allegedly by vaccines. I didn’t go that route, but I did try a magnetic mud bath that claimed to pull any toxic metals out from the skin. All I know is that it caused a huge mess in the bathroom, clogged up the drain, and ruined a few bath towels.
It was all crap.
There were other suggestions on the list I never tried, having eventually reached the point where curing my son was less important than getting him the support he needed to reach his potential as the wonderful person that he is.
Still, there were health issues at hand and one tiny 3-year-old who was still wearing 18-month-old clothes. I needed to act to find a doctor who could really help us. Not one who would insist on further homeopathic ‘food sensitivity’ tests or push force feeding mineral oil. A real autism gastroenterology specialist.
Those in my now-antiquated Yahoo autism parent email group recommended this doctor at Mass General. When I called, the nurse told me that he wasn’t taking any new patients. I cried. I begged the nurse to get us in, afraid that if this doctor couldn’t help us, I would lose my son. After five minutes on hold, she told me he would see me the next week.
Dr. Buie, one of the leading researchers of autism-related GI disorders, got us a G-tube to fatten up the boy, nourish his body (and brain), and we saw somewhat of a leap in development shortly thereafter. We put him on a friendly pro-biotic strand saccharomyces boulardii, which the doctor said might help balance his digestive system, and it helped a little. And over the years the doctor followed my child, he developed and grew eventually to almost the size of his peers.
Every six months I would ask him, “So, what’s the latest in autism research?” Oh, there’s the broccoli thing being tested now, and there’s also a study in prenatal vitamins possibly containing too much folic acid, and occasionally something would pique my interest. But it was one treatment currently being tested that made me say, “Holy crap. I need to get some of that holy crap.
Disclaimer: I do not want to cure my son. I wouldn’t want to change a thing about him. Having said that, if I could find something that might alleviate his discomfort, make life easier for him, and make him feel better in any possible way, count us in. And this something might quite literally be some holy crap.
It’s called fecal transplantation, and studies are showing that by transferring some poop from a person with an intestinal microbiome balanced with the ‘right’ healthy bacteria into the gut of a person with autism, some really great things have been happening.
Studies have shown that people with autism and other related neurological disorders are lacking in certain beneficial bacteria in their guts, which allows the colonization of the unhealthy bacteria to flourish. When these particular strains of bacteria (not found in yogurt) are introduced, GI problems as well as some self-injurious behaviors start to diminish, speech improves, and sensory sensitivities lessen.
Cut the crap, right? Sounds icky and gross, transplanting the ‘fecal matter’ of a stranger into one’s self or one’s child – but it sure sounds a lot more promising than all that other crap we tried years ago.
Studies are linking all sorts of neurological disorders with gut bacteria, including schizophrenia, depression, and obsessive-compulsive disorder. Could relief really come in the form of … a little poop?
Who would have thought, after all that crap we paid for and tried, that years later (literally) crap would be the Holy Grail of autism treatment? Holy crap, I call it. And with a little luck, perhaps, I’ll get my hands on some of it. (Not literally).
By Jean Perry