Tuesday, April 2, 2013

"You see it's too much to ask for and I am not the doctor."


After PJ's evaluation for Early Intervention gave us an indication that the possibility of Autism was there, we set out to find a physician to diagnose and treat him. But, as it turns out, there are many, many children who show signs of Autism and very few pediatricians who specialize in child development.

What the hell????

Autism numbers continue to rise- according to Autism Speaks, 1 in 88 children are affected by Autism Spectrum Disorders. We live in southern New Jersey, which is five minutes from Philadelphia, an hour from Delaware, two hours from New York, three from Baltimore and a little over five from Boston. In short, we don’t exactly live in the sticks. We have a number of major metropolitan areas and some of the finest health care centers in the country at our disposal. So when it was advised that we make an appointment for an evaluation with a developmental pediatrician, it was off the The Googles I went.

I searched within a 50-75 mile radius of where we are because…well, would you want to drive with a could-be-Autistic Toddler for much more than that? Plus, if we found a facility we liked it just wasn’t feasible that we could make such a long drive for treatment. Remembering that we are five minutes from Philadelphia, I came up with a whopping FIVE facilities that offered care in Developmental Pediatrics. F-I-V-E.

I worked the phones and spoke to very, very nice administrative assistants who took my information and warned me that the wait for an initial appointment was long. Very, very long. One Philadelphia hospital sent us a packet with a lengthy questionnaire and a letter warning us of an even lengthier wait time- they weren’t accepting new patients until 2013!!!! And this was in August of 2011! A wait that long would turn me Autistic! Still, now I understood why it was so impossible to see a doctor in a normal length of time- there were too few physicians taking care of way to many 1-in-88 kids.
Sadly, all of the practitioners sent out long packets that we needed to fill out. I think I filled out theM-CHAT (a tool used in the diagnosis of Autism) at least twenty times. It was frustrating, and the continual reminders of my son’s developmental shortcomings made me sad and tired.  Pete and I made the decision that unless another facility offered a significantly shorter waiting period, we would hold out for The Children’s Hospital of Philadelphia. They are not only known worldwide for being top-notch in children’s healthcare, but they boasted one of the top Autism research centers in the country. We filled out our jillionth M-CHAT and answered our squazillionth question and mailed off yet another  stack of papers that detailed our fears for our son.

There was a postcard to let us know that our information had arrived. A few months later, there was a letter to let us know that in a few months, we could expect a call for an appointment time a few months after that.

Well, for goodness sake. If I had any idea that the wait would be like this, I would have started the process while I was still pregnant, just in case! Can you imagine that phone call?
“Yes, I am calling to make an appointment for my as-yet-unnamed fetus?…Yes, I did fill out the M-CHAT…Well, my husband and I became suspicious when we learned that we were, indeed, gestating a human child and that alone means there is a 1 in 88 chance of an ASD…Okay, great! Looking forward to speaking with you next year! Thanks for getting us on that waiting list!”
Or something like that. Either way, Pete and I had filled out every paper that needed to be filled out, and it was a waiting game. We did our best to continue with Early Intervention and to stay sane while we speculated.
Turns out, staying sane is the hardest part.

2 comments:

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SMD @ lifeaccordingtosteph said...

This is so crazy to me. You'd think with all the specialists in Philadelphia that you'd have an easier time finding someone.