So like most moms, one of my most consulted doctors is Dr. Google. There was the time my son had really aggressive allergies but Dr. Google said Whooping Cough, so we ran him to the ER. (Like I said, it was just really aggressive allergies.) There was the other time that he had an angry skin rash, so I consulted Dr. Google, and it was determined that he had Meningitis, or maybe Hand Foot and Mouth. Or possibly, Mad cow? There seemed to be a lot of options. Most of them some form of cancer. (It turned out to be Eczema.)
Needless to say, a large percentage of my mom life has been spent being frightened by internet research. Until now.
If you have read any of holly loves john before, you may remember that my two year old son, whom I lovingly and anonymously refer to as the Little Prince was recently diagnosed with Autism.
There is a lot of internet research about Autism. I would say too much internet research. So much so, that each foray into the wilds of the web you take, means not just “a grain of salt” but a machete too, just to cut through the undergrowth of pseudoscience and hooey. Let alone the in-depth analysis and decisions you have to make when you get to the legitimate research. It’s pretty exhausting.
But maybe not in the way that you think.
Typically, I might find all this advice to be overwhelming. I’d worry, and worry, and worry… “Is my son ok? Is he in pain? Will he ever be able to talk to me? Will he ever have friends, find love? All those things “normal” people want in life…” And truthfully, it might have started out that way.
But. Not. Anymore. No. Now, I’m exhausted from the sheer amount of times I have told the internet to fuck off. You want to describe my son as a nightmare and a burden to me and my family? Fuck you too, large organization that makes money off of his disorder. (I’m looking at you AutismSpeaks.)
You want to tell me that it’s some form of radiation that is sapping “the hormone that causes us to feel love.” Excuse me? Did you seriously just say that my son doesn’t feel love? You’re about to feel something, but it won’t be love. It will be my nails, in your face.
I was trying to describe this “fuck off” feeling to John this morning, and the best way I could describe it was like pure id, mama bear, zombie attack. These faceless entities keep trying to pigeonhole my son into some kind of “problem” that needs to be “fixed.” And I want to fix that by making them truly faceless—with my teeth.
Maybe it wouldn’t be such a problem if they really were all just faceless internet armchair scientists. They’re not. Right now, I’m in the middle of family dispute over just such research. This particular family member, who I will not name, because I love her, very much, and do not want her smeared, even if I am angry… This particular family member has really latched on to a particular article that says Wifi is the missing link to Autism. That the inflammation wireless radiation may cause is to blame for all his problems.
Now, it would be easy to dismiss this entirely, mocking my family for being “duped” and asking them what kind of crystal I should get to hang around his neck to dispel the evil WiFi. BUT, I think there is probably a legitimate correlation to radiation and health problems. Especially when it comes to sleep and the production of myelin in the brains of children. Nonetheless, I did not find the main study within the article to be legitimate, especially because the works cited mostly came from the author herself. No peer review. No actual experiments, just cherry picked data from sometimes dubious sources.
I tried to be polite in my refusal of this advice. (All while seething at the actual wording in some of the studies. See above: blocking hormones that create “human emotion, like love.” Fuck you, cherry picking scaremonger.) I talked about how it was impractical for our family to completely eliminate one of the most used resources in our home. That the Little Prince and I use the WiFi daily. That I use it for my writing, my audiobooks, and I cannot afford to completely hardwire my home just because of one article.
(Truthfully, if one of our doctors even alluded to the idea that turning off the Wifi would help him be happier, not “better,” or “recovered,” just happier, we would have already ripped the router out of the wall. In a heartbeat. But no one has, not one of the many, many doctors and therapists the Little Prince has seen. Not one.)
This was not enough. The family member kept refuting all of my reasons, and giving me other options. I gave the one piece of information that I thought would end it, my coup-de-grace. The Little Prince is completely non-verbal, we are looking into a device that will allow him to speak with us using pictures and buttons on a screen. It requires WiFi. Nothing is getting in the way of that. And besides, I said, in my view, correlation is not causation. I would need more proof.
I thought that would be enough. But it kept bothering me. It ate at me. While I taught my students how to spin a cane, while I created costuming measurement spreadsheets, it was always there at the back of my mind. (I’m directing a summer musical, if you did not know already.) No matter how strange and different the task I was doing physically, at the back of my head I kept hearing “the Wifi will make him into an emotionless robot. And you are a bad mother for choosing it over him.”
In fairness, I know that was not what she was saying. And that my anxiety disorder can turn an irksome phrase into an implication that will ruin my every moment if I let it. Nonetheless, it was there. The implication—biting at my heals as I choreographed a Charleston dance number way too similar to the Electric Slide.
So, I did more of my own research. I brought my father into it— a literal Wifi and technology expert for a large school district, completely comprised of radiation vulnerable children, and I asked him his opinions. I told him about the study my family member had sent me, what it claimed, and he explained the data that the study did not include. The radiation of other devices including walkie-talkies, cell phones, and even light bulbs, that had no provable correlation with a spike in Autism. I talked about how the markers of Autism and diagnosis of Autism had changed over the years, causing for a much larger spectrum and so therefore inflating the numbers of Autistic children, without actually increasing the rate. So basically— correlation is not causation, the same conclusion I had in the beginning.
I mentioned this. Still, not enough. So after four cathartic letters, that I appropriately trashed, I settled on sending an innocuous article, from buzzfeed of all places, called A Paper Claiming WiFi Is Linked to Autism is Accused of Pseudoscience. It was the same study that bothered me in the article she had sent me. I thought that would be enough to put the email chain to bed.
This caused a debate on the motivation of such scientists, that they might be influenced by money. This was followed by another hypothesis as to what else might be wrong with my son. Heavy metal poisoning, perhaps? Maybe it was the anesthesia from his surgery that has caused his Autism? Yes, that terrifying surgery that was one of the worst moments of my life, yes, that surgery. Yes, let’s mention that casually in an argument. That seems like a good idea.
Nope. Nope. Nope. Nope. Nope. Nope. NOOooooooooooooo.
A fifth cathartic letter was written. And this time, I sent it. Part of me regrets this. You should never send an email in anger, especially self-righteous anger. It’s always a bad idea. And I know, deep down, she was just trying to help. And I also think, deep down, for me, that it was the “we must” that she kept repeating that made me the most angry. That “we” must be vigilant in this “adventure” together.
First, the “adventure” is my son’s life, and it is his adventure, not ours. And second, I was pretty sure that she was not apart of the “we” that made him. I should know, I was there. And her presence would have made that a bit awkward.
It may take a village to raise a child, but it sure as heck didn’t take a village to make him. And the ones that “made him” are the ones that make the decisions that help him to live his life… And another thing!
It’s radio silence now in the argument. And per usual, I am beating myself up about it. I shouldn’t have got so angry. I should have just let it go, and decide in my own time if it was something I wanted to look into. I don’t know, I should have done a lot of things… But there is one thing that I am absolutely positive of in all of this.
He is not a problem to be fixed. He is my son. And he is the light of my life.
I know that he is loved by all involved. That everyone in our family loves him. (How could you not? He’s adorable.) I have no doubt of any of this. But he is my son. I am his mother. No one else can claim that. It needs no double-blind, no peer review, and no works cited. There is no argument. There is no doubt.
He is my son. And he is no problem.