Saturday, June 13, 2009

What NOT To Do....

As autism becomes more and more common, with it come greater odds that each and every person reading this blog will at some point in their lives be affected by it. It may be one's own child, grand-child, niece, nephew, student, a friend's child, or anyone else we come across in life.

Current statistics estimate 1 in 68 families in the United States has at least one child affected by autism. Depending on the information one reads, I have seen autism estimate rates said to be 1 in 151 children to all the way as high as 1 in 60-something children in certain areas of the country. (And the CDC adamantly argues that we do not have an epidemic on our hands! Bull-oney....but that's not why I am posting today and with any luck, I won't go off on a tangent about that.)

Because I know not everyone reading this has yet been affected by autism in some way or another, I would like to offer my two cents worth of what I wish more people around me would have known as we began our journey into the land of autism. The more people I meet who have children diagnosed with autism, the more often I hear stories of how parents discovered their own child's detour on the journey of having a typical childhood. Furthermore, the more online research I do on my own, the more often I see people on parenting message boards advising parents to consult their pediatrician with concerns about autism or developmental delays. Surprising as it may be to many people, in our case, it was not our pediatrician who clued us in on our son's developmental delays. Nor was it the pediatrician who gave any indication of possible developmental delays to a single one of the parents of other children I know who have autism spectrum disorder. Sadly, I am not surprised by this at all.

Pediatricians generally schedule their appointments in ten or fifteen minute increments for each patient, with some of them even double booking - just in case. Really, what do they think they are - an airline?

With that said, ten minutes is barely enough time to perform the basic tasks expected of a well-child appointment let alone get into an in-depth discussion on whether the child is developing motor skills and behaviors at the same or similar rate as his or her typical peers. I vaguely remember bringing up a few concerns to our doctor regarding Reiss and his quirks, as I called them back then, at a few of those well-child visits only to be told that all children develop at a different rate and all children have their quirks. I can only imagine how my husband and I would be the only people in America not affected by the economy if I had a dime for every time someone gave me the "All children develop at a different rate" line or the other one I hate, "Oh, that's normal for children that age."

So....rule number one: If you think your child or a child you know has autism, please don't depend on the family doctor or the child's pediatrician to have any idea of what may or may not be going on with the child in regards to developing.

I know what I am saying contradicts the main purpose of well-baby and well-child visits - to make certain a child is hitting milestones and developing at a typical rate. I also know it may sound like I have a distrust in the medical community and for the most part, I do, but consider this: On any given day, the number of children these doctors and pediatricians see amounts to an average-sized elementary classroom full of children. Some of those children have a serious illness but for the most part, many children are there because of a runny nose and the parent wants it fixed.....now.

Is it any wonder pediatricians miss so much? When they see so many children each day and spend such a small amount of time with each child, many of whom have parents who over-react to the smallest illnesses more often than not, I can easily understand how it would be difficult for a mainstream pediatrician to weed out the legitimate concerns voiced by parents and distinguish them from the more commonly proclaimed trivial matters.

So if we can't count on a doctor - someone who is supposed to be trained in detecting problems - to offer guidance in determining whether or not a child is developing properly, who can we count on? Ourselves. We can only depend on ourselves and the people in our children's lives. We are the ones who spend countless hours with our children and really know them inside and out. We can usually predict the outcome of a situation before our child reacts. We know their likes, their dislikes, and their quirks too. We know when something just "isn't right."

When James and I began to think something was going on in Reiss that just "wasn't right," we talked to probably every person we knew who has children or in some way has experience with children. With the exception of one person, everyone we talked to chalked up our concerns as being "normal." Unfortunately, we did not listen to the one person who advised us to contact our local early intervention office to have Reiss evaluated for developmental delays.

Fast forward approximately a year and we finally decided we were no longer going to discount our concerns about Reiss as being simple quirks and totally normal for a child his age. By this time, he was nearing the age of three and that's the cutoff for early intervention services. Our next stop was the public school system.

I'm not going to go down this road today and explain how we got from Point A to Point B of where we are today but the point I do want to make is this: If you are someone who knows a child with behaviors that seem out of the ordinary, confide this to the parent if you are on that kind of level with them - but do not tell them, "Oh, that's normal" if they voice concerns to you. If you think your own child has any kind of developmental delays at all, do not depend on your pediatrician to give you a kick in the pants on getting your child help. Contact professionals who specifically deal with this type of thing daily. If you don't know who to contact, ask your pediatrician. Most likely they do not know autism when it's sitting right there in front of them but they can probably help with dispensing the contact information for those who do know it when they see it. The worst thing that can happen is your child has an evaluation and his or her quirks turn out to be just that - quirks.

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