We are grateful to Lynn for publishing this essay -- hers is a difficult position, and she is brave to share her experiences so that others can learn from them. A reminder: while The Thinking Person's Guide to Autism commenting policy encourages civil disagreement, personal attacks will be deleted. -Editors
If you’ve ever considered pursuing biomedical interventions or “biomed” for your child with autism, you are probably aware that these approaches -- which include special diets, dietary supplements, off-label prescription drugs, and heavy metals detoxification -- are controversial.
Biomed proponents believe their approach can “recover” children with autism, and reduce or eliminate autism symptoms. The mainstream medical community considers many biomed interventions unproven and untested, and some, such as heavy metals chelation, potentially harmful. It is not surprising that attitudes towards biomed approaches get polarized.
Still, every family I know has consensus about biomedical approaches. Not mine. My husband is staunchly pro-biomed, and I am … not. So, how does a couple work together to help their child when their beliefs conflict?
First, choose your biomedical practitioner carefully. Don’t hesitate to air your qualms or anxiety over pursuing certain interventions. I always ask tons of questions and make my conservative feelings evident. If a doctor is any good, he or she will pick up on client’s attitudes and proceed accordingly. The first biomed doctor we saw did not respect my stance at all, and didn’t last long as a result.
Our other two biomed practitioners have been exceedingly sensitive to my feelings. I’m sure at times they felt more like marriage counselors than doctors, and in an ideal world, my husband and I would have come to some common ground before entering their office. But enlisting them was the only compromise I could find -- my husband wanted us to go full steam ahead on biomed from the beginning, five years ago, when my daughter was just eighteen months old.
Second, take good notes. We’ve tried so many biomedical approaches and been at it for so long -- if it wasn’t for my notes, I wouldn’t remember much. With the introduction of any protocol it is important to keep a running journal, noting when something new has been introduced and any resulting changes in behavior or skills.
It can be exceedingly difficult to associate new food or supplement introduction with behaviors, sleep patterns, breakthroughs, or regressions, especially if you are introducing multiple changes, as we did: my daughter tried GFCF (Gluten Free Casein Free) and Specific Carbohydrate Diet (SCD) elimination diets while beginning intensive behavioral therapy and a regimen of supplements. Since my daughter did not display any aggressive behaviors, we mainly looked for positive results with her focus, speech, and motor skills.
With the diets, it was difficult to pinpoint any benefits for my daughter. Some parents claim to see positive results from the diets in just a few days, but we did not. It was also very challenging to eliminate and substitute foods for a child who was already a picky eater -- parents who aren't extremely careful can end up with a biomedically sound but nutritionally deficient diet -- and it pained me to take away the foods that were one of her few sources of pleasure. It seems to me if a child has not definitively tested as sensitive to certain foods, if you are not seeing obvious changes in behavior after implementing diets, and you are not seeing regressions after re-introducing those foods, then there isn’t much point in continuing.
After trying elimination diets for a few years, we slowly reintroduced foods to my daughter and carefully noted any changes. There weren’t any to speak of. My husband and I have come to agree that, with diets, it is most important for our daughter to have a healthy, well-balanced diet with lots of fruits and vegetables, and minimal sweets and processed foods.
As complicated as the diets can be, they were only part of our biomed story. Since age two, my daughter has been on countless vitamin and mineral supplements, as well as prescription drugs. Each time a new item was introduced, I was terrified about what it might do to my child, plus worried that we were voluntarily making my child’s challenging life harder. I made sure we ramped up dosages as slowly as possible, and staggered the introduction of multiple supplements -- so that I could more easily pinpoint any positive or negative changes. And of course I took, notes, notes, and more notes.
It is tempting to think of vitamin and mineral supplements as fairly innocuous, but mega-doses of any of them can produce negative side effects – and that is what happened with my daughter and injectable vitamin B-12. Due to my husband’s enthusiasm, I ended up sticking out my daughter’s B-12 trial far longer than I should have; but when I called the doctor to ask his advice he told us to cease and desist immediately, and my husband listened.
We also tried Valtrex, an anti-viral medication used by people with genital herpes, as well as chelation, which is probably the most controversial of all the alternative autism therapies. The (scientifically unsupported) theory behind autistic children taking Valtrex is that live viruses from vaccinations are still lurking in the kids’ guts. The use of chelation in treating autism is based on the (also scientifically unsupported) belief that autistic children are carrying a burden of heavy metals, from the mercury-based preservative thimerosal that used to be in scheduled childhood vaccines, as well as from environmental toxins. Chelation agents, which can be administered orally, via rectal suppositories, or intravenously, are supposed to bind to these heavy metals in the body, then get excreted.
We did three non-concurrent months each of Valtrex and EDTA chelating suppositories, and I never noticed anything but the same negative side effects from each of them. My daughter experienced flu-like symptoms that made her lethargic and irritable. As with anyone who feels like they have the flu, her performance at school and in therapy suffered. Her ability to transition and accept new situations -- not exactly the forte of any child with autism -- was even further impaired. She started exhibiting aggressive behaviors, which she had never before, hitting and biting teachers and aides at school. She was basically miserable all of the time.
One of what I consider the more maddening mantras in the biomedical community is the “gut-it-out” approach: if your child freaks out or gets sick or exhibits intensified or worsening behaviors while on the protocol, this is actually a good sign. It means that they are going through a “detoxification,” and that the medication is causing all manner of toxins or viruses to be set loose in their bodies before ultimately expelling them. Maybe. Or maybe they are just experiencing the awful side effects that come with using prescription drugs on a child for a purpose that has not been tested. It seemed to me to be counter-productive to compromise my daughter’s schooling and therapies for the vague promise of some benefits down the road.
Couples should consider all the potential costs before embarking on a biomed journey with their child. The most obvious is the financial cost, because most biomed protocols are not covered by insurance. But there are other, potentially more significant costs to consider: The disagreements between my husband and me have been bitter and contributed to, at times, a very unhappy household that certainly didn’t do my daughter any good. And I felt a profound breach of trust between my daughter and me every time I had to coax her to take a supplement cocktail against her will, or saw the anxious look in her eyes when I pulled down her pants to give her a B-12 injection or insert a chelation suppository.
Even advocates of biomedical approaches to autism will admit that there are no one-size-fits-all answers. In the case of my daughter, it’s my opinion that none of the interventions had any positive effects at all. She has made progress, but I suspect it’s in spite of, not because of, the biomedical protocols that we’ve put her through.
My husband and I remain in a state of biomed détente, which is stressful. But thankfully our biomedical practitioner, whom I love, has helped us achieve some compromises,-- such as steering us away from some of the more extreme protocols. And my husband and I have been able to achieve compromises on our own, as we did with diet. It’s not ideal, and I’m still not always convinced that we’re doing what’s best for my daughter, but it’s where we are.