I'm done.
Done, done, DONE with reading autism blogs, Facebook groups, discussion boards, etc. etc. Anything where the point of the dialog (sic) is to prove why "we" love our kids more than "you" do. The whole thing is a lot more complex than this, but generally and roughly:
Group A believes that autism was caused by vaccines, that their children are damaged and that government and big pharma are responsible. They generally follow alternative medicine/biomedical protocols, say they will do "anything" to help their kids (including potentially dangerous interventions) and this means they love their kids, are more devoted to their kids, than Group B.
Group B is the group that doesn't believe in the vaccine theory, but believes autism is caused by a combination of genetics and some kind of environmental trigger (needle-in-a-haystack here). They are often called the "Neurodiversity Movement" (ND). They believe that their kids are not "damaged", and that they shouldn't be spoken about in disrespectful, angry terminology such as Group A uses. They believe autism is a lifelong condition that there is no cure for, hence the "snake-oil" treatments of Group A are nonstarters. They believe they love their kids more because they accept them for who they are without trying to "cure" them, and that they don't waste time being bitter, disappointed, etc. because they are "too busy loving." (That last is an actual quote.)
Here's me: though I do fall into the ND camp regarding the causes/root of autism, I am heartily sick of the holier-than-thou attitude that lately has been springing up on boards and blogs around the Web. Even bloggers that I usually admire, find informative, humane and funny sometimes stumble (in my opinion) and start slamming the parents in Group A and tossing about the ol' "If you really loved your child you'd be more like us" thing. Yeah, Group A does it, too -- but they're not my people so it bothers me less.
And here's each and every social/movement group:
1. They all have an agenda
2. They're filled with well-meaning people
3. They get swept up in political bickering and infighting and uncivil behavior
4. They're prone to using hyperbole OR minimization to further their agenda/viewpoint/side
5. They each have their own magazine
Regarding #4: here's how I see it working.
Group A -- the Vaccine Group -- often focuses on the most difficult aspects of raising children on the spectrum: the toileting issues, the tantrums, the occasional violence, etc. Remember: they believe that Big Pharma caused this, so showcasing the results of that serves their purpose. In short: bring on the negative.
It's a distortion.
Group B -- the NDs -- sometimes downplays the worst aspects of raising children on the spectrum, saying it's not that bad and even if it IS bad, you shouldn't talk about it in public -- if you do feel angry/sad/disappointed you should suck it up or see a therapist (who will tell you these feelings are normal, but I digress).
Sometimes I get the feeling that the parents in this group who have "higher-functioning" children are especially cold toward parents who have "lower-functioning" kids. They don't want to hear about the bad shit. The whole "I've never been upset -- I was too busy loving" thing is a clear example of this. There's something of the Pollyanna in this. It's not just that we shouldn't complain about our kids in public (a sentiment I agree with up to a point) -- it's that there's something wrong with parents who grieve over their child's autism.
And here's where it bothers me personally: 90% of the time, I'm fine with Henry's autism. Hey -- it is what it is. I love him as he is. But 10% of the time, I STILL struggle with it -- because I am scared of the future, and worried that he will never learn to communicate, and that life for him will be really, really hard.
And I still have days where I feel sorry for myself. When I feel weighed down with responsibility, when I wish parenting were easier. (I'm sure I'd have the same feelings if I had two "typical" kids.)
And I have days where I feel a bittersweetness as I watch Frieda learn to walk and talk (she's talking!) -- and I know that someday soon she will speed past Henry, developmentally. And I feel sad, sad, sad.
And I don't feel like Group B would have much sympathy for this -- not from what I've seen lately. Sure, they'll be all "Why can't we all get along?" and "We all love our kids" and they'll hold out an olive branch of sorts to Group A, but when it comes right down to it, the rigors of their moral philosophy are a bit, well, too rigorous for me.
Plus, I think they lie.
I think at least some of them feel sadness and disappointment more often than they admit. And let me make an important distinction: when I say "disappointment", I never mean disappointed in Henry. I mean disappointed FOR him -- that he will never experience some of the things a typical kid does, and that things that are easy for a typical kid will never be easy for him. An inability to communicate (not just talk -- communicate) is a huge handicap. Yes, it's a handicap! And I say that not because it makes life difficult for me, but because it leads to all kinds of misery for Henry.
Example: this summer he has been having hysterical crying jags. One week, they were near constant. He cried at home. He cried at school. He was inconsolable, and we tried everything. Finally I brought him to the doctor. Three people held him down so we could get a temperature. (You can imagine how distressing this was for him. And he was already crying.) He couldn't say what hurt, if anything; what was bothering him; why he was sad. Nothing. Not a clue. Feeling that kind of despair -- and not be able to make others understand it -- must be a kind of hell. Being helpless in the face of it is.
Parenting a child with autism brings, in my experience, an admixture of emotions: joy, sadness, despair, depression, optimism, bravery, weakness. It's all in there. It's a complicated stew. And lately I've been reading too many bloggers in Group B who don't recognize that, or don't believe that, or would -- in short -- have no sympathy for anyone who doesn't express only pride, joy, and love where their children are concerned.
THAT'S a distortion.
No one who parents any child at all can possibly say, with all honesty, "I'm never upset -- I'm too busy loving."
Are those really mutually exclusive? I can't be sad and loving, scared and loving, anxious and loving, yes even angry and loving?
To some of the Group B'ers, apparently not.
So I'm done with 'em: Group A, whose conclusions re. vaccines and conspiracy theories I can't agree with, and Group B, who lives on some rarefied moral plane I can't aspire to. It's not human up there; it's made for the gods.
And it's far too cold.
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