First: some background.
1) My son has autism.
2) Among the treatments for autism is the so-called DAN (Defeat Autism Now) protocol, which I describe in some detail below
2) There is a barrage of information and misinformation on autism available on the internet.
Speaking of misinformation...on to Jenny McCarthy.
A recent posting on twitter of Ms. McCarthy and her ongoing campaign for "Autism Recovery" set me off on one of my recurring spirals of rage, guilt, frustration and fear. Most of the time I can talk myself down from these episodes, but this time I needed to write about where the feelings come from and why they are so focused on her so-called "activism". I bear none of these feelings for her personally. I don't know her, and, in fact, I understand completely where she is coming from.
Five years ago, my son was diagnosed with autism at age two, and, at the time, I felt that the world had ended. I felt sorrow and Big Guilt (what did I do wrong? How did I ruin him? What did I eat or drink or think that did this? Am I a bad mother?). I felt grief over losing the boy I thought I was going to have - the one who played with his friends, ate too much junk food, asked me "why" over and over, called me "Mommy" and begged me to play with him. (My son did none of these things at the time, nor did he until much later.) I felt frustration and anger over the role I now felt I had to play in his life - I wanted to be his mom, not his goddam therapist. I wanted to take him to birthday parties and play "go fish" with him and teach him soccer, not sit with him for hours trying to get his attention long enough to get some kind of recognizable response. (Exactly how many times would I have to repeat the same frickin' word over and over??) And, most of all, I felt fear. (What will happen to him? Will he ever talk? Will he ever love me back? How will he cope? How will *I* cope??) All of these feelings ran throughout the ones that drove me to try to help him anyway - the main one, of course, being Big Love, the kind you can only feel for your child.
And there I was, with a new baby girl who might have autism and a toddler boy that absolutely did. Of all the feelings that snarled deep inside me, the ones that kept popping up were Big Love and Big Guilt. I felt driven to do the best I could by my children, but how? What could I do to help them? And, most compelling of all: How can I spare my daughter from this? This was the time where I was at my most vulnerable, the "bargaining" stage of my grief. I was, in fact, ripe for Jenny McCarthy and the DAN protocol, and their promises that my son could "recover", and be the boy that I (and, it seemed, everyone else) thought he *should* be. Recovery! No more practically begging him to look at me! No more backing out of taking him to the park or to playgroups because the other parents started giving me The Look! No more having to explain to my family why my son did the things he did, when even *I* didn't fully understand what he was experiencing! It seemed to good to be true. All I had to do was follow the DAN protocol to the letter like a good, determined parent who loved her son and everything would be fine.
First, research. I found some books on the "Starving Brain" explaining how children with autism could not adequately absorb nutrients essential to development. I found a doctor that would provide the blood tests and vitamins we needed. Although none of this was covered by insurance, by golly I loved my son and it was worth every cent (thanks to my mother, who was willing to help me financially, or we would have gone broke.) I found out that my son was allergic to casein, but not to gluten. Still, he had "leaky gut" in which gluten blocked essential neurotransmitters in his brain (or something like that... like all religions, it seemed to make sense at the time) and we had to cut out gluten and casein *immediately*. Oh, and we had to not vaccinate because of the toxins and heavy metals in vaccines (never mind that mercury had not been used as a preservative in vaccines since the early 90's, there was other stuff in there.) In fact, we had to de-toxify his environment as much as possible. No carpets, no plastics, only lead-free paints and metals, no nickel, only an organic mattress. I got rid of our carpets, and only used glass or stainless steel to cook with. I only used pyrex to store food in. I bought him an organic futon to sleep on. (Actually, this was one of the lifestyle changes I kept.) And, most of all: supplements, supplements, supplements to feed his starving brain.I had to give him detoxifying clay baths. If I kept to the regimen, I was sure to see results, I was positive of this. Other parents said so, Jenny McCarthy said so, and, most of all, my Big Guilt said so. If it failed, it was because I wasn't trying hard enough.
If it failed, it was because I wasn't trying hard enough.
At three years old, my son was taking up to thirty vitamin supplements a day. He wouldn't swallow pills, so I had to empty the capsules into milk and add a lot of agave sweetener so he would drink it. He remained the same sweet boy he always had been, but something began to change. He started to act more lethargic, more moody. I thought this was progress. My husband began to do some research of his own, and found out that, on the advice of the DAN physician, we were giving our son amounts of zinc that was toxic for adults. He had a bad reaction to another one of the supplements, but the physician's response was "keep giving it to him, he'll get better." These things, combined with the lack of any notable "recovery" on his part, caused a war in my heart between Big Love and Big Guilt.
Big Guilt said "You're failing! You haven't gotten rid of all the gluten, somehow! The doses aren't right! There are still toxins in his body! If you quit now, he'll never recover and it'll mean you didn't love him enough!" while Big Love said "This treatment isn't working because it's not the right treatment for him. It's making him sick and miserable, and you broke and miserable. Find the treatment that is right for him and discontinue the one that isn't. You tried your hardest, and now it's time to try something else." Luckily, Big Love won this round.
And here it is: the crux of my feelings toward Jenny McCarthy and the DAN protocol. They both use the complex machine that is Big Love and Big Guilt to push the idea that autism is a disease that must be destroyed, like AIDS. That our kids with autism are suffering, damaged, broken, hurting, and it's not only our fault (because we vaccinated them, or breathed the wrong air, or ate the wrong thing, or thought the wrong thoughts), but it's up to us to fix them. If we don't try, then we are bad people who don't love our kids enough. And, worst of all, if it doesn't work, it's because we just weren't trying hard enough.
While it's true that many parents report that their kids have responded will to GF/CF diets and/or the DAN protocol, it's not a magic cure-all. And it won't work for everyone. And if it doesn't work for you, it doesn't mean you don't love your kids enough. I would read stories about how someones' child seemed to change overnight from a child deep in the well of autism to a social, outgoing butterfly, all due to some magic formula of the DAN protocol and chemical chelation of some kind, and I would cry with frustration and jealousy. And then Big Guilt would start whispering to me that I was failing my son because, after all, how did I know I had gotten rid of *all* the gluten? How did I know that he was taking *all* the vitamins? Or that, if I quit now, he wouldn't just be lost to me forever?
This is a terrible, dangerous message to spread, not only to the autism community, but to the community at large. The worst part of this message is that it exists only in the subtext of Jenny McCarthy's activism - she never comes out and *says* any of this, it is only implied in the minds and hearts of those of us in the throes of Big Guilt and Big Fear. So, we OD our kids on vitamins and refuse to vaccinate them and grow to fear and distrust the science and medical community. While it's true that they don't know everything, they are trying their damndest to learn all they can on how to best help our kids, through sound, repeatable research. That's all any of us can really ask of them.
As for me: I'm in recovery. While it was hard to deal with the hard truth that there is no magic "cure" for my son's autism, there are tools we can use to further his progress. So far, the best treatment we've found is consistent ABA sessions with people he knows and trusts. At nearly seven, my son is reading, using the computer, starting to talk appropriately (not just echolalia) and starting to play with his little sister - this things are not happening because my son is recovering. They are happening because he is progressing. He calls me "Mommy" and holds my face in his hands, looks me in the eyes, and smiles - and I'm feeling better about his chances in the real world. The feelings I described in myself are still there, and will always be there, but their voices are quieter now.
Thanks for reading, even if you skipped to the end ;).
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