|Yes, that's me. Wrinkles and all.|
One of the toughest issues about being an autism mom that I have faced over the past ten years has been how to get along with other autism parents.
Look, at 41 years old, I know that I’m a bit of an acquired taste. Either you “get” me or you don’t. I’m blunt. I’m opinionated. I say too much, most of it without thinking it through first. Let’s just say that I’m not being offered a diplomatic position anytime soon.
But with the skyrocketing rates of autism, you might think that we’d stick together. That we’d get along. At the least, you would think that we’d be fighting for the same goal.
Well, I guess we have the same goal… helping our children progress. Hoping our children progress, really.
The fighting occurs over how to make that happen. And boy, some parents can really bare-knuckle it.
Yesterday I was excoriated on an online forum by a (crazy) mom (who is probably on the spectrum herself) because I dared to suggest that a new mom (whose kid has yet to be diagnosed but probably has autism) might want to put her child on probiotics when he is on antibiotics. The new mom had started him on antibiotics for an ear infection and saw his behavior worsen. She wanted to know if anyone else had ever seen this.
I also suggested she try to find a DAN! doctor. (A DAN! doctor treats children with autism from a biomedical perspective.) Not because I think a DAN! doctor will recover (cure) her child, but because they see lots of the same issues day in and day out and might have a different perspective than your standard pediatrician. We saw a DAN! doctor for years, and she was very helpful in cleaning up my son’s gastrointestinal, sleep and immune issues.
And no, obviously, she did not cure my son. And no, she was not anti-vaccine. And no, she did not suggest that a magic crystal hung around my son’s neck would help.
And yes, she asked at each visit what behavioral therapies we were doing, what his schooling was like, and what social skills we were working on.
Well, you would have thought I had just jumped into bed, naked, with Jenny McCarthy and started French kissing her the way this woman flipped out at me.
She started online screaming at me (YOU KNOW IN ALL CAPS AND NO PARAGRAPH BREAKS, I HATE THAT) about how there was no treatment plans and her son and Temple Grandin didn’t have treatment plans and they were just fine and her son went to the prom and had early intervention and full inclusion and now is learning how to drive and I don’t know what I’m talking about and people need to be aware of the charlatans out there…
I swear, she didn’t taken an online “breath” for one second.
You know, with all due respect to this woman’s son and Temple Grandin, my best guess is that my son’s autism is very different from theirs. I dare say, they don’t even have the same thing.
Mainstream scientific consensus is starting to build around the understanding that “autism” is a broad term, that there are subsets of different types of autism, and that they are probably caused by different things (who knows what but here are only some theories I've heard: Is autism contagious?). But, because of their symptomatology, they wind up with this diagnosis: autism. (Symptomatology, cool word, eh? I had to look that one up.)
So my theory is that this is why parents are at each other’s throats. (I know you’ve been dying to hear this.)
Our kids don’t necessarily have the same disorder, even though it’s called the same thing.
Some treatments work great for some kids, some treatments work better for others. Nothing works for every single child on the spectrum.
And our kids’ needs are intense. So we become intense. (Key part of the word: tense.)
There are zealots on all sides, screaming about what worked for their child and you’re a crazy-ass stupidhead for doing it your way.
Next thing you know, you’re looking out the window for Child Protective Services because you gave your child a Methylcobalamin injection. (That’s B12. I know, totally radical those B vitamins.)
Look, I’ll do what I think is best for my kid. You do what you think is best for your kid. We’ll swap stories over a hot cup of Hawaiian Kona and we’ll go home to our spouses and our kids (with and without autism), and struggle along the best we can, knowing that autism is a great big puzzle that has more than one way of being completed.
So, and I quote Rodney King here, “"People, I just want to say, you know, can we all get along?"
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