One of my babies has autism
A vaguely familiar number rang my cell phone one recent Thursday afternoon.
Normally, I let a call go to voicemail when a strange number appears. Most of the time, it’s vendors trying to sell me payroll services and other business solutions. My number landed on some call list or another when I opened my business to work the now-defunct Atlanta Nosh food festival.
I’m super busy at work and can’t be bothered with outside calls (I think I regret giving my mother my desk number), yet I felt compelled to answer in this instance.
Who is this? I know this number…!
I answered. And then my day turned a little upside-down.
It was the genetic counselor from The Hatchery. You remember The Hatchery. It had been a while since I spoke to anyone there. The last time was three or four years ago, when I had a job interview near the clinic. I stopped by and visited with one of the nurses who frequently worked with me.
But it had been eight or nine years since I talked to the genetic counselor — typically a “one and done” conversation, in the initial paperwork phase. What could she possibly want now?
“As you know, we’ve had good success with your eggs…” she began.
I was already caught off guard by the phone call, itself. The counselor’s opening statement added to my disorientation.
Is she updating her records? Do they want me to do more donations? Why is she calling me, and not a nurse? I’m too old… did they change their policy? (even though I remembered reading last year, according to new fertility studies, I’m not too old)
What the counselor said next, I don’t remember, exactly. Amid the confusion, the word autism blared.
One of my babies has autism.
My guts and organs and bones dropped through the floor.
I don’t remember my response to the counselor… a string of exclamatory remarks, no doubt, followed by, “Poor baby!”
This was hard news to take in. It’s not supposed to turn out this way. My mind instantly went to the parents and child. These poor parents, who endured cycle upon cycle of infertility, disappointment, hopelessness, made a measured decision and spent thousands of dollars to have, ostensibly, a healthy baby… only to have it result in continued, lifelong hardship.
Miraculously, I was able to summarize back to the counselor everything she told me, to make sure I understood correctly.
The baby… toddler… a boy, is on the low end of the spectrum (thankfully?). His genetic workup showed a “blip” suggesting autism. Dad was tested and ruled out. Mom, obviously, has no DNA in the game. That leaves me… or it could not.
I won’t go deep into autism here, like theories and debates surrounding it. But the autism still may not have been passed down from me.
- No one in my family has autism. Though, I kind of always joked about having Asperger’s, for non-jokey reasons — too many to get into here.
- The baby’s gene could be an anomaly; a new mutation.
- The mom could have had the flu while pregnant.
- Other gestational events could have occurred.
- Chemicals in the environment could have influenced the outcome.
- Sometimes (more like 1 in 68 times) it just happens! Things, and not only autism, just happen in babies even under otherwise perfect conditions, genetically and environmentally.
- Notice I don’t mention anything about vaccines.
Would I be open to getting tested for the duplication?
Yes, of course!
The counselor said the results would be inconsequential even if the mutation does show up on me; it won’t mean anything even if I have babies of my own. It’s just for the parents’ peace of mind. They just want to know.
Still, I was shaken and felt sad. Sad for the family, that things went unexpectedly, that they have to deal with this… and I don’t.
But here’s something interesting:
I know how I feel about this: sympathetic, melancholic, alarmed, stunned. Yet, when I share this news with people, their reactions don’t match mine. Like they’re assigning me a feeling I should be having. Or they’re projecting what they would feel if they were in my place. Because this is what people say:
“It’s not your fault!”
What? I never said it was!
How does me expressing a fact long-faced — one of my babies has autism — translate into me feeling at fault, or even faulty, for it?
As if I had forethought or knowledge of an anomaly and went through with egg donation anyway.
As if eeeevvvveryone but me has deep understanding on how genetics work, so I need their reassurance. Excuse me. Fun fact #1: I loved doing Punnett squares in biology class. Our teacher assigned us a complex one once — if I remember correctly, it was 10×10 squares, houseflies, for extra credit — and I thought it was FUN to work out! Somewhat-related-but-not-really fun fact #2: I also loved learning about the parts of a cell in biology and thought “oral groove” and “anal pore” would make great band names. Fun fact #3: Fun facts 1 and 2 partly explain why I didn’t go to a single prom.
Again, the autism may not even come from me!
I know, I know, people are well-meaning. They don’t want me to feel bad about it. And they haven’t experienced egg donation and everything it entails, so their frame of reference is different from mine. Still, people are pegging me wrong.
I didn’t go inward — I don’t feel responsible, and I don’t feel sorry for myself. I don’t mean that in an uncaring, unfeeling, “fuck ’em, who cares, that’s not my problem” way. I mean I don’t feel responsible biologically — which is all the responsibility would be, anyway. My initial reaction went outward, to the family.
If anything, I feel guilty that my day-to-day life remains unchanged, and I wish I could do something to help beyond consenting to a blood test.
Or maybe the feelings surrounding this are too complicated for me to explain outside of my own head. I can’t even articulate myself properly here. (obviously, this is a poorly written post)
But, right now, I know I’m not directly liable for the baby’s condition, nor do I feel it. Maybe that will change, depending on the test results. I’ll know in a few weeks.
Coincidentally, I’m in charge of the autism content at work and acquainted with the condition. So, leave it to me to make an “Aspy” remark to the counselor: “At least, we know the baby doesn’t have Rett syndrome.”
Hopefully, that was just me being wry, and not a mutated gene expression.
3/17/16 edit. Yep, the duplication is found on me. The genetic counselor reiterated that it really doesn’t mean anything because I’m an otherwise healthy person. So… there you go.