I have a hard time sorting fact from fiction. I've heard that almost all doctors are pawns of the pharmaceutical companies, except for a few special ones, the only ones who really care about our kids. But they don't take insurance (insurance doesn't take them), and they happen to be very, very expensive. I've heard of special laboratories that run tests other labs can't because no one else knows how to do them. (If your child's results come back positive it means he needs the treatment; if they come back negative it means his body is retaining the toxins and he really needs the treatment.)
I've heard that my son's autism is my fault because I didn't play with him enough when he was a baby. I read that in many cases, autism is caused by using hair dye during pregnancy or having breast implants (but sources of information like these are anonymous). I've heard that one side of my son's brain grew more quickly than the other—thank goodness, though, there's a doctor who knows how to cure that. I've heard that vaccines cause autism—some researchers proved it, but other researchers say the first ones were wrong, and then there's another set of researchers who say the second batch of researchers was either paid off or they don't know what they're talking about.
I've heard that antidepressants can help, but if you pick the wrong one your child may commit suicide. I've heard of natural, behavioral, pharmaceutical, and psychiatric treatments, occupational therapy, sound therapy, deep nerve stimulation, spinning and bouncing therapy, magnesium supplements, Applied Behavioral Analysis, Floortime, TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children), Relationship Development Intervention, staring deeply into a child's eyes until he is cured, having him wear colored lenses, enforcing sensory diets, reading social stories, offering special diets, taking dietary supplements, employing rubber chickens (for social-skills therapy), injecting vitamins, doing chelation therapy (stripping the body of heavy metals), taking hyperbolic oxygen treatments, having more parental consistency, using physical punishment, using restraint, putting children into isolation rooms or quiet rooms, giving more parental attention, making my son use his words instead of just giving him what he wants, taking the advice of Super Nanny, and getting a dog.
It's a lot of information. Some of it is great and would really help my kid. Some of it would waste my time and money and may even harm my child. But I can't always tell which is which. A lot of people are telling me that their solution is the right one, and some of them insist that if I don't listen to them, I'm a horrible parent who doesn't love my child. What if later I find out I could have cured him but I didn't try, because I didn't want to spend the money or because the treatment was too inconvenient for me? What if my choice hurts him? What if it kills him?
Even if I try to dig deeper for information, I may have difficulties. Chances are, I'm not a research scientist. I have no training in reading a study and evaluating it properly. Is a particular study well done? Is its population selected in an unbiased manner? Are its data statistically significant? Are the statistics it presents relevant or misleading? Who funded the study and why? Were the tests they used valid? How do they relate to tests used by other researchers? Are the study results repeatable? How is the study received by other researchers in the field? Why? Are the tests they used really measuring what they set out to measure? Were the data collected in a trustworthy manner? Major peer-reviewed medical journals sometimes can't sort this stuff out; they think a study is good science and publish it, only to retract it later. If they sometimes have trouble evaluating studies, how am I going to do it?
Sometimes I may disagree with you. It's not because I'm delusional, stupid, or lazy. Sometimes I'm doing the best I can just to swim in the flood of information directed toward parents of autistic children. If you think you have an answer for me, by all means share it. But don't be offended if I keep searching for another. After all, you may not be a research scientist, either.
When your child has autism, taking him on a trip to the grocery store is like running the gauntlet. If you're physically able to pick up your child, you put him in the shopping cart, even if he's too big. Failing that, you keep your eyes and perhaps a hand on him at all times. Otherwise he may run—into the parking lot or the wine section or the aisle of cleaning products. As you make your way through the store, you stay in the middle of the aisle to reduce his ability to grab things from the shelf. You make sure he has his comfort objects with him or something on hand to distract him. You do everything you can think of to increase the odds of making it through the store with as little trouble as possible.
You can't control everything, though. He can still see things he really, really, really has to have right now, or his world will fall apart in a big way. Buzzing fans, flickering lights, or cold refrigerated sections may overwhelm him and send him into a tantrum. Watching another shopper taste-test the grapes may trigger loud, indignant demands for punishment of the thief. Or, your child may decide to do something really unusual that makes sense to him and no one else, like licking the person in front of you in the checkout line.
Your child has perfectly good reasons for his behaviors. Unfortunately, they are not obvious to the people around you. Folks with autism don't have a giant “A” tattooed on their foreheads. They look like everyone else. When you're out in public and your child acts in a socially inappropriate manner, you're lucky if bystanders just think your child is strange. Typically, however, they assume he's an obnoxious brat whose idiot parents don't discipline him properly. Unless the child is 16 years old and 6 feet tall, in which case they may think he is dangerous.
You can almost always tell what the people around you are thinking, because they give you looks of puzzlement and disapproval. They gather their children and walk away from you with expressions of shock and pity. Sometimes they stop to offer you some advice, too.
“If you'd just discipline him more, he wouldn't do those things.”
“You're not really going to buy him that after the way he acted, are you?”
“Can't you keep your child under control?”
“What's wrong with your child?”
“Why is he doing that?”
“A good swat on the rear would take care of that.”
“Is he retarded?”
“Your child is bad.”
“If you were more firm at home, you wouldn't have this problem.”
“We like you very much, but we'd rather you didn't bring your child.”
And that's just from the adults. The things kids say are worse.
Now multiply these reactions by however many years your child has been mobile and all the places you've visited together—not just the grocery store but every public place you've ever taken your child. The park. The library. The movies. Doctors' offices. Your parents' house. Sunday school and church. Other kids' birthday parties. Family reunions. His classroom. Are you beginning to get the picture? Imagine watching your child run over to play with other children on the playground, only to have the group disband as he nears. Then the kids regroup somewhere else, and when he tries to join them, they run away again. Picture your teenager sitting alone in the school lunchroom while kids talk under their breath as they pass by him. “Freak.” “Weirdo.” Imagine your grown child never having a friend or a romantic relationship because he's unable to grasp the nuances of social interaction.
Years of rejection can make someone a little touchy and a tad defensive. It's human nature. If you watch your child get rejected enough times, you lose your trust in people. It's easier to withdraw than to take a chance again. You start to see
