False positive

f

“And then the husband passed out.”

I chuckled at the doctor’s story like I was supposed to as the technician prepared the biggest needle I had ever seen in my life. The specialist was sharing anecdotes about fainting spouses in an effort to distract me from the upcoming procedure.

As I laid there with my belly exposed I didn’t cry despite being constantly on the verge of tears for three weeks. It began when the nurse from the OB’s office called. Abnormal test results. Follow-up required. Call this number. Have a nice day.

An hour before, the Level 2 ultrasound had been fascinating enough to distract me from weeping. The technician had pointed out fingers and toes in all their 3-D glory. She told me to look away at the right time since she knew I wanted the baby’s gender to be a surprise. The actual existence of this baby should have been surprise enough for me, but why not keep playing the game?

Despite my desire for suspense, I had signed a bunch of release forms during my last visit to the obstetrician. I read the disclaimers but thought, “What’s the harm? They’re drawing blood anyway.” Knowing that bad things happen to other people, I consented to the screening tests as a formality.

When the results had come back indicating that the fetus might have Trisomy 18, I was shocked. I had never heard of the genetic disorder. Thanks to the power of the internet, I soon knew enough to come undone.

That’s how I found myself in the office of a specialist in high-risk pregnancies. He explained how they did not confirm any markers for the condition during the ultrasound. If I wanted to know without a doubt, however, I needed amniocentesis. Through tears I asked to use the phone. I had come to the appointment alone and didn’t know what to do. I called Peter, and we decided to find out for sure.

I was alone in the room with the technician, the doctor and the needle. The fluid was drawn out. I was sent off and told to wait for the results.

Another week passed in uncertainty. I tried not to think about what we would do if they told me my baby had a fatal disorder. All I thought about is what we would do if they told me my baby had a fatal disorder.

Impatient and anxious, I called the office for my result. Oh, the nurse says when I finally get a call back. Everything’s fine. You just had a false positive on your blood work.

The stress of a false positive made me swear that, if I had to do it over again, I wouldn’t get the screening tests.

But I had the tests. So what if, when I had consented to them, I could have opted to find out if my unborn child had autism?

Just writing that sentence makes me almost as physically ill as I felt during those uncertain weeks.

On the one hand, if I had known that Philip was autistic when he was born, I could have made his life so much easier by providing the intense sensory input he needed. I could have avoided putting him in to situations that caused him anxiety. I would have known from the start that he would not develop language or learn skills in the same way that neurotypical children do, so I could have adapted my strategies.

You’ll notice I’m talking about all of the ways that I would have changed my own behavior. Not for one instance would I have changed Philip.

That’s easy for me to say now, knowing what I know about autism.  Yet, even though I starting reading about autism in preparation for Philip’s diagnosis, nothing I learned kept me from feeling a sense of loss when we were given confirmation.

The other day on Karla’s ASD Page, she wrote the following:

There is no reason any more for newly diagnosed people or parents of newly diagnosed Autistic people to spend precious time or energy working through feelings of fear or sadness because they fear Autism.

There may be no reason, but this is still happening. That’s why even thinking about the possibility of prenatal screening for autism makes me anxious. I don’t know what people would do with this information. When I was pregnant, I was aware of autism, but I didn’t really understand it. I was far from accepting, too.

That’s why I’m blogging this month. I’m telling those willing to read this that autism is not a death sentence. Claiming it is would be a false positive.

*****
F is for false positive.
I’m blogging on the theme of autism acceptance as part of the Blogging from A to Z Challenge and linking up to the Yeah Write #103 Weekend Moonshine Grid. 

14 thoughts on “False positive

  1. ugh, the dreaded false positive, brings very true negatives while you wait. and everything is scary when it’s new and not understood. and I hope i’m not being insensitive, but i’m sure there are a range of emotions newly diagnosed parents would go through, and fear and sadness both seem to be understandable.

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  2. I am sorry you went through this scary experience. My sister also had a false positive (but for Down’s) from that blood test. My ob didn’t even recommend doing it for that very reason.

    I am glad you have your beautiful boy 🙂

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  3. Genetic screening as a broad issue has so many potential plus and minus points especially when it comes to ethics. Information can be really empowering but not if it’s a knee jerk, “OMG PANIC!” situation. Thought provoking post. Every time I read one of your posts I really admire the attitude you have towards your son’s diagnosis and autism in general.

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  4. I am actually a part of an autism diagnosis team, and I agree that knowing from the start what sorts of things might be beneficial and challenging could be helpful. But, that would be true for every child, and as you know, each child with autism is just as different from one another as they are from ‘neurotypical’ children. But, broad strokes, some sensory processing and language awareness wouldn’t hurt.

    I’m glad this Trisomy screen was a false positive!

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    1. You bring up a great point. With experience, we learned that our son needed sensory input. Others on the spectrum, however, need to avoid it. Would knowing in advance really solve that issue?

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  5. Sounds like a very scary time for your and your family. I always opted out of the testing even though I was considered advanced maternal age & higher risk. i didn’t need the additional stress of false positives.

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  6. Thank you for sharing your hard, raw, emotional experience with enduring the screening tests. I am older Mom so my OBGYN highly recommended that I do genetic screening tests when I was pregnant with my daughter. In my situation and the timing of where I was in my pregnancy I was told that it would be more for me and my husband to have time to prepare if we got news that we were not having a typical birth. Ie maybe I would have to be at a special post-natal centre, we would have to go to courses, line up community courses, get counselling, child care etc. I think this is reasonable because where I live community/ provincial resources are limited and wait lists are long. If we had known our son was Autistic before birth we would have been more informed, had OT lined up ASAP to help him reach milestones ie crawling, walking easier and of course SLP assistance. Where we live IBI therapy is available but by the time my son was identified with ASD and was tested for the program we had to use private help to asist him when he could have and should have received gov’t help at 2 when he would have benefitted greatly. I’d like to add that because my daughter ended up having a dangerous birth we immediately were able to access OT and SLP intervention and it helped her alot and I remember thinking wow if only my son had that kind of help at 6 months?

    You have raised some very interesting discussion points 🙂

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  7. You’ve made me feel better about turning down all the screening tests with both my kids. I had several friends with experiences like yours, and didn’t want to go through that. Their are pros and cons on each side of the issue.

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  8. As a mom who had prenatal testing with the implicit decision beforehand that I would only use information gained to prepare myself should I be carrying a child with special needs, I too spent several days waiting on follow up test results. You express the agony of waiting well in this piece.

    I’m stopping in from AtoZ and enjoying reading your posts.

    Take care!
    -Cristyl @ http://www.mychillthoughts.com

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    1. Thanks for stopping by.
      If we knew everyone was going to use the information in advance only to prepare, then it would be okay. After I published this, I came across another post that talked about the ethical considerations of genetic screening, not only as related to autism, but with anything that is “different.”

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