Our Spectrum Revisited

Over the last year, Sam has made so many strides that his dad and I started to wonder if maybe he was losing his diagnosis. It is one thing to discuss it secretly between us, but quite another for his developmental pediatrician to say, “If he were to be tested again, he might fall off the spectrum,” as she did at our last visit.

So we got on one waiting list after another — for OT and speech assessments and the ADOS, or the Autism Diagnostic Observation Schedule. This is probably the only test that the boys have NOT had and it’s supposed to be a pretty good indicator of ASD, especially with very verbal kids like Sam.

Six months came and went and still no appointment for the ADOS. One day Kennedy Krieger Institute called to ask if we’d participate in a new research study, one that looks at identical twins to see if environmental factors, but not vaccines, might have something to do with “turning on” an autism gene. And could they administer the ADOS to both boys at our convenience?

I have always wondered if John’s early years in the hospital had something to do with the severity of his autism, if maybe a MRSA infection in a 4-month-old baby followed by a four-week course of vancomycin might have contributed in some way.

This study might show that it did.

Not that we would have done one thing differently back then. John needed heart surgery. Because of it he got a staph infection, but without the drugs to treat it, he would have not survived.

But what if we had known that John would be susceptible to developing autistic disorder if his tiny body experienced such trauma? What if even a little extra care in disinfecting his room, the crib slats; limiting visitors to just his parents — what if it could have prevented the MRSA infection? I have no doubt he’d still be on the spectrum, this is just what I believe — but would he be more like his brother?

And will this make me grieve if I find out?

I often come here simply to share something in our lives only to find that I’m not sure how I feel after all.

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  • Hmm. In a way, many of us have those questions – was it this medication, that medication, the prematurity, the stress …

    I wonder what would have manifested for Reilly if I had not taken 3 months’ of Terbutaline to stop premature labor. He certainly would have come much earlier, and at what cost? And if the Terbutaline had caused his brain tumor, wouldn’t someone have made that connection by now? And why was his development delayed, even though he was full-term? And had I known he was delayed and had sought help, would he have been diagnosed with ASD? Would that have been an accurate diagnosis?

    I guess I would feel very surprised if the study does give you an answer, since there are so many of us thinking we’d like to have answers.

    If I was at a juncture where I might be handed those answers, as you are, I don’t know how I would feel. Validated? Disappointed? Would I be angry at myself, or the doctors who made the calls?

    I always thought I wanted the answers…

  • Exactly, pixie. Sigh… there are so many darn variables and you raise so many good questions about Reilly. It’s not fair for any of us to dwell here, and I know that, what good, really, can come of it.

    In the truest sense, I’m writing my way out of this place of unsurety, to take measure of how I’m feeling, and this study. And it’s… complicated. Especially on little sleep.

  • I don’t know if you’ll find what you’re looking for–but sending hugs. Yes, we all have questions, wonder the what ifs to infinity and beyond, you’re certainly in good company there. 🙂

  • Ugh, I’ve dwelled there, too, even though I try not to do that too often. And I ask myself, if I ever find out what caused it, will it be a relief, or will it bring me to my knees? I honestly don’t know.

  • I have a lot of similar questions — prematurity, Rhogam, cord-entanglement (not that I could have done anything about that). It must be hard when your twins are so very different. I would always be analyzing the differences in their experiences,as it seems you are.

    If knowing the cause would help me find the best education or treatment, I would want to find out. Otherwise, I might prefer not to know.

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