Pediatricians are not evil or stupid. Autism disorders are new to their world, and doctors are still catching up, especially when it comes to treating children with mild autism. They're learning, but they're not there yet. Certainly they're not to the point where they can offer parents an education on autism or an outline of the child's current difficulties or of difficulties yet to come.
If a parent brings a child in and says he has terrible anxiety and is threatening to hurt himself, a doctor will refer the child to the necessary mental health specialist. But few doctors yet know that most kids with autism experience anxiety and anger issues and would benefit from learning emotional control before they get to the point of self-destruction.
Few pediatricians keep tabs on the occupational-therapy programs schools offer to see if they're sufficient or need to be supplemented elsewhere. They don't refer children for more in-depth testing, such as that used for visual tracking or auditory processing disorders. They don't give parents a list of assessments that need to be done, either by school personnel or by other medical and mental health professionals. They don't know what questions to ask parents to keep tabs on their patients' development. Typically, they tend to ignore the autism unless things get drastic. In the meantime, they refer parents to the local public school.
But the schools often aren't good resources for getting guidance, either. It worries me that the law limits what you can and can't tell me and that you hold the purse strings that pay for my child's therapies and education. This means that whenever you give me advice, there is always a question in the back of my mind about whether or not what you're advising is in my child's best interest—or your own. Are you telling me he doesn't need an aide because you feel he's ready to work on the next step toward learning independence? Or is it because you just don't want to pay the aide's salary? Because of the way the educational system is set up, there's a good chance I may not feel comfortable relying on your judgment. So, while your advice is helpful, it may not provide me with the guidance I feel I need.
As a parent, my child's pediatrician and school are my primary resources. Right now, there really is no other place I can go to get help in overseeing my child's overall development. I may be fortunate enough to hook up with specialists—a psychiatrist, neurologist, gastroenterologist, orthopedist, dietician, or a therapist or two. These professionals are godsends to our family. Their advice and hard work help my child immensely, but these specialists work independently of one another. I am the one who has to evaluate their opinions, coordinate the treatments, communicate their wishes to the school, and look to the overall development of my child.
When a need appears, I'm the one that has to determine its cause and decide the best place to get help. Is this problem due to my child's sensory issues? Is talking with the school's occupational therapist my best choice? Or is this issue part of normal childhood development? Is my child's behavior a reaction to his medication? How can I relay his teacher's observations to his psychiatrist? She tells me things and I take them to the doctor, then he asks me questions I can't answer. I can go back to the teacher, but the psychiatrist is busy and it will be weeks before we can get another appointment.
I have a hard enough time finding answers to the problems we face today, let alone trying to guess what difficulties my child may have in the future. What do we need to do now to prepare him for later? Do we wait until he's in high school and struggling to keep up with taking notes in class, and then regret not giving him more occupational therapy when he was in elementary school? Who's going to tell me what we need to do today? It's not enough that we're getting him through school this week or this year. What does he need to be as competent and happy an adult as possible? Who do I talk to about that?
Right now, there is no place I can go to get overall treatment advice about my child. I need one. I need a reliable autism center or a doctor who specializes in autism. I need someone who knows more about autism than I do to oversee his development and help me coordinate his therapies. I need help, and I need it now.
I'm being bombarded by information about autism. Unfortunately, 80% of it is false, misleading, or downright dangerous.
Up until a few years ago, it was hard to find information about autism and almost impossible to find any about mild autism. Now it seems to be on the cover of every magazine and newspaper—from Newsweek to Glamour to Parenting. My library and local bookstores have dozens of books, few of which agree with one another. Celebrities appear on my television, telling me how to cure my child. Some doctors are telling me autism is incurable, but others say they've found the answer. Google lists more than 18 million Web sites about autism, and most of them are selling something.
While some of the information is valid and helpful, most of it is hooey. The hooey may be the product of well-meaning, misinformed people, but there's a good chance it's been produced by someone in search of profit. For every tear we shed, someone tries to make a buck off of us. It's an ugly aspect of human nature and is unfortunately nothing new.
During my search for answers, I've been told so many things that sometimes 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?
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