if not downright disastrous.
And your friends? Unless they've got a child with special needs, they won't even understand your questions. “What do you mean, your child doesn't know how to make friends?” Parenting books and magazines are useless, too. They only tell you that your child is probably just fine, and if you're really worried, you should talk to his doctor. They don't tell you what to do if something's actually wrong. They gloss over that and move on to how to throw the perfect birthday party. Your pediatrician is great for diagnosing and prescribing medicine to treat some of the symptoms of autism but is typically not much help for behavioral problems, like when your child acts like a dog on the playground, complete with sniffing the backsides of other children.
Where do parents go next? To the Internet? It's a wonderful tool, capable of generating a vast amount of information. It does so in seconds and dumps out a great big pile. There's gold in that pile—you just have to be able to sort it from the hooey. Unfortunately, if you knew how to recognize the good from the bad in the first place, you probably wouldn't have had to search the Internet at all. Support groups are wonderful and nurturing, as long as the members are actively seeking answers instead of just sitting around complaining. Specialists and therapists who know about your child's disabilities are fantastic, if you can find them in your area and can pay their fees.
It's not easy being the parent of a child with special needs. Trying to use the parenting skills most of us arrive with is like trying to fix a computer with a buzz saw and a spatula. They're great tools—they're just not the ones we need.
Please understand that we've tried all the skills we have to help our children and ourselves. We're doing the best we can with what we know how to do. It's not enough. We need to find someone who knows about the challenges our kids face and can teach us something new. We need more than the typical set of parenting skills, and we need them now.
Most pediatricians are not trained to treat children with autism. Some know how to recognize autism and will provide a diagnosis, but few of them do more than tell parents that the school will take care of their child's difficulties. It's rare to find a doctor who knows what our kids need, what the local schools will and won't do, and what to tell parents to watch for. Parents walk into the office with concerns and typically walk out with those same concerns. At best, they get a word or a phrase written on a piece of paper—a diagnosis that other professionals will often dispute. Rarely do they depart with any idea of what to do next.
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
