Thursday, February 24, 2011

A Boy Named Sue: Procreation on the Spectrum

Both Audrey's teacher at school and our home ABA consultant are expecting, so Audrey has babies on the brain right now.  She loves repeating how these ladies have "a baby in their tummy" and rubbing their bellies.

And then there was this convo:

Audrey:  "I got a baby in my tummy."
Me:  "Is it a boy baby or a girl baby?"
Audrey:  "A boy baby."
Me:  "What's the baby boy's name going to be?"
Audrey:  "Sue."
Me:  "Sue?!?!  That's a girl's name!"
Audrey:  "This boy is Sue."
Me:  "What are you going to do with Sue?"
Audrey:  "He's gonna get in his crib."
Me:  "What are you going to do when he cries?"
Audrey:  "Say, 'Stop crying!'"

So this was all cute and hilarious, but then I got a little...not really sad, but I dunno...wistful?  I know that she's  not even 7 yet, and trust me I'm not one to close myself to any possibilities for her, but..I feel in my gut that she's not going to be able to care for a baby at any point in her life.  Not a typical one, and for sure not a special needs one that her genetics may make it more likely for her to have.

She's going to have to
be satisfied with shoving
this under her shirt.
Several months ago I guest-blogged at Amanda's Life is a Spectrum (I can't link directly to the post...it was on 10/15/10) about Audrey and Amanda's son Billy (also on the spectrum) getting married in the future, hahaha.  I had just watched the HBO documentary Monica and David about two adults with Downs that got married.

In the documentary, they showed Monica's mother reminding Monica to take her birth control pills, and addressed the issue of procreation.  The mother, I thought very reasonably, said (and I'm paraphrasing here) look, I've spent my entire life raising and advocating for my daughter, trying to ensure that she can live as independently as possible, pouring everything I have into her, and now I'm retired and we're in a good place and guess what?  Monica and David don't have the mental capacity to raise a child, and I'm not doing it for them.

In my guest post, I light-heartedly addressed the prospect of Audrey and Billy getting married, and received a bemused comment from a high-functioning autistic saying that, "What happens when ASD kids marry each other is pretty much what happens to anyone else".  And while that may be true for her, it's certainly not true for everyone on the spectrum.  Not at all.


So what do you think is going to happen to Generation Autism when they reach adulthood and start pairing off?  I'm thinking that one possible rule of thumb for me will be:  if Audrey is still referring to it as "getting a baby in her tummy", it's probably not go time.

36 comments:

  1. like anything, it will be interesting. I know 2 aspies that are married with 2 kids. the kids are also aspie.

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  2. There is no way now to tell what Audrey will be in 10-15 years. She may surprise you and be quite independent. She may not have any interest in boys (that can be a good thing, don't you think?). Or she may. Something you can't worry about right now. Right now I think the lessons need to be concentrated on who she's texting on the phone and if Chow Spy is really a secret code.

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  3. I wish I had the words to spit it all out in a way that sounds like I have something beyond a third grade education but......I'm just not that great with words sometimes..........

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  4. I don't think it's possible to look at any seven-year-old and imagine that the kid will ever be old enough or mature enough to raise a kid. Hell, I don't think it's possible to look at most twenty-somethings and think they'll ever be old enough or responsible enough to raise a kid.

    I'm on the spectrum, and I have one biological kid, one foster kid, one godson, three grown stepkids, and a step-granddaughter. Of course, not everyone on the spectrum can be a good parent, but not everyone who's neurotypical can be a good parent, either.

    This is not the first generation with autism. It's the first one in which kids are being diagnosed in great numbers, but there are lots of us out here who have walked this path before, and many of us are parents. You don't hear a lot about autistic adults raising children, mainly because we challenge everything the experts say about autism, based as it is on small children who haven't figured anything out yet.

    Many of us have great qualities that make us wonderful parents. Just ask my neurotypical daughter. :-)

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  5. @Rachel: I agree with everything you said except possibly your first sentence :) I personally know (and know of) plenty of adults on the spectrum who are wonderful parents...that goes without saying. But my daughter is not high-functioning and she is not Aspergers. At 7 years old, she is like a 2-3 year old...so it's hard not to extrapolate that ratio and doubt that she'll ever reach the maturity to raise a child. Obviously the jury is still out and I'm not exactly losing sleep over it...I think it's her upcoming 7th birthday that gets me thinking about stuff like this and wondering if she will ever "catch up".

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  6. Katie is HF enough that I think she could probably raise a kid, although her emotional issues leave that up in the air, really. HF Aspergers is one thing, but there are even those who are Aspie's and are not HF themselves...it really is kid/person dependent and how affected they are come adulthood. I think it's good to be realistic about your child. Yes, don't stop wanting and fighting for them to reach their full potential, but also don't set yourself up for disappointment, either. I am practical like that to a fault, though.

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  7. The best and worst advice I ever received is "take it one day at a time." Harder than hell to do, but I find myself coming back to that thought a lot, because it helps me maintain my sanity when I start worrying about the future. I totally understand how you feel, children will not be a reality for some of our kids. In the meantime, let's hope we can muddle through today without any injuries.

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  8. Audrey is adorable - no doubt about that! As for her not having children in the future, who knows, really? Plus, who says she'll even want kids. There are lots of childless women who live productive, fulfilling lives without ever having kids (I personally can no longer imagine how they could but...)

    I think you are very brave and/or very savvy (probably both) to put this post up because you know it can stir strong feelings. I personally think it's a person to person variant and has been a choice that has been made by others long before we were even born. I hope for my son the love of having his own child someday. But wishing and worrying in the end won't change it. I think we just have to live it as it comes!
    (Sorry - didn't mean to write a novel)

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  9. You (and I) have NO idea what the future holds for our kids. All you can do is the best you can for them right now, and hope for the best in the future. I say the same thing about both my kids (although I'm pretty sure Child 2 is going to run the world some day, and surely he'll give his brother a job?)

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  10. I can't believe you went there. I'm not listening to this. LA! LA! LA! I CAN'T HEAR YOU!

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  11. You sound like you've got a pretty good handle on it. You're instincts are solid, and you'll do what's right for Audrey, and you. (((hugs))) I know that wistful feeling. Believe it or not I get it with Coleman. It's hard for me to see him as ever being able to speak to a girl let alone get a date or knock one up! LOL :-)

    Guess we'll all just have to wait and see.

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  12. You're a brave, brave woman to be thinking that far ahead. I thik it scares me too much and I can only get through today. Buuut, it sounds like you have a good head on your shoulders and for that she's one lucky (super lucky) little girl--hugs--L

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  13. Fuck you for making me think about this.

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  14. wow, it must be spring or something, becuase i've been stewing on this as well.

    I really work at living right now and don't even think about the future. actually, that's not true--i've been thinking about when he hits puberty and how i'll have the "discussion" with him since i know his dad's too chickenshit to do it. that's about the extent of my thinking so far.

    I think we should just bank on Jill's boy to take over the world, with our children as his lieutenants, and hope they remember to feed us.

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  15. I've thought about this too. I dont really want any grandkids. Never did. So I only will feel sad if GA wants children and it's not in the cards. But maybe it will be? I kinda hope she will find a husband and they will choose to raise dogs, llamas, dolphins, extra-terrestrials?

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  16. Yeah it's thoughts like these that send me into a downward spiral...

    At this point in our lives it's hard for me to imagine Brian being able to handle a child....I like to think we'll have these miraculous growth spurts between now and adulthood but who knows...

    It would be ridiculous for me to think he's not going to have urges (thanks hormones!) and I really, honestly, have no idea how we'll address those when the time comes- hopefully I will know how to deal with that stuff when the time comes....

    sigh....

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  17. If she follows in her mother's footsteps, you don't have to worry about this stuff for another 62 or 63 years.

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  18. i have nothing to say about this. But I love DaniG's comment.

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  19. My son is 26 and knows he would like to have a girlfriend. He is not too sure about a marriage...but he really really knows he doesn't want kids 'cause they would poop,spit-up, and puke on him!

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  20. I love your big balls!! Hmmm gender confusion may be hereditary?
    Louis calls all other humans "him" "it" or "that". He screams if he sees me naked, not for the obvious reason, but because "you need to put your penis back on". No worries here yet.

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  21. This just depresses me. I agree with you! Raising a kid requires a certain kind of capacity to care for another person. Not everyone on the spectrum is capable of doing it. This doesn't mean that Audrey won't get to that point when she's an adult--she might. But the idea that she--and others--might not is sad.

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  22. Erm... can I respectfully disagree here? Firstly, I do think it is possible to predict that there are certain things SOME of our children are unlikely to do, so I don't subscribe to the 'You can never know' school of thought. There are some things, for some children, that you can have a pretty good guess at! Secondly, I don't think this is sad. WE think it's sad because it's not what we'd choose for ourselves, but our kids have very different interests to us (!!!) and will find other ways to lead productive lives. Some autistic kids grow up to make great parents, some don't. I completely understand about having a sad moment, I get them too, but hey, we're the ones who get to look people in the eye and say 'Of course I'm not a grandmother, I'm not old enough' and have a chance of getting away with it. Or maybe not :)

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  23. Yeah, from the first moment we got Ted's diagnosis, I have pondered this. I don't want to go so far as saying my sweet littke boys might never become fathers. However, there is the thought (mine) that they SHOULDN'T. They come from a long line of drug and alcohol abuse, mental illness, autism and learning disabilities and limited mental capability. The odds of them having NT children are pretty astronomical. I am not talking eugenics here, but like the mom with the Down's daughter...when is MY time? Our oldest was 13 when we got these monkeys - we were so close to having an empty nest, it freaked me the fuck out. That's why we got the boys. I can honestly say, now, that I am done. i don't want any more kids, I don't want to raise any more kids, I don't even want to hold any more kids. I will not raise my grand kids.

    But, then, how could I not? We adopted children. How could we let our grandbabies go into a system as flawed as social services?

    These things keep me up at night. Fuck. Thanks, Lynn!! Haha!

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  24. Raising kids often means taking the tiger by the tail - meaning willing to handle the tough stuff and realizing the dangers. I think your post showed unabashed courage in facing all possibilities!And that's the kind of advocate parent all children need! You are awesome!

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  25. I second Dani's comment! lol Mine is HF Aspie and 12. So not ready to think about this stuff, even with the HOURS he spends in the bathroom lately.

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  26. My daughter’s birthday is also coming up and it is hard not to get caught up in the will she evers. I haven’t really got to thinking about her having children, so thanks for bringing that one up. I can’t even imagine being a grandmother at this point.

    Are you really having a hankering to be a grandmother? Maybe you could do some babysitting with Audrey, that should cure you both.

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  27. You're so welcome for the bum-out post of the year :P

    @rcarrick: I love to hear from parents with adult "kids". Your son is very wise. Thanks for stopping by and commenting!

    @Noonie: Funny, no one's every told me to put my penis back on. Hmmmm....

    @bbsmum: I don't think that we disagree. I wasn't really sad...as long as Audrey stays as happy as she is now, then I'm happy.

    @Kelly: You bring up really good, but really gnarly points. See, you said the word "eugenics" not me! Obviously that is a crazy scary concept, but the bottom line is who will take care of the kids that this generation might produce if they are unable to?

    @bluecottonmemory: Thanks...and thanks for stopping by!

    @AmyLK: Ew.

    @mamafog: I'm soooo not hankering to be a grandmother. I will barely survive motherhood.

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  28. I try to look into that crystal ball all the time. It pains me to think that my son may never be an independent adult, let alone have a family of his own. Maybe he will, but you can't help but think about it.

    This was the weekly "etchical dilemma" on Private Practice last night. A teenager with Down's got pregnant with her boyfriend (also with severe learning disabilities).

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  29. At the risk for appearing lazy not posting my own opinion I will say that I completely agree with bbsmum. It's not PC but people need to get a handle on reality.

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  30. Aaaah, I dunno. Honestly I haven't given it much thought. My eight year old only started speaking in sentences this year. I can see why this crosses the minds of parents with higher functioning kids though because it is a very real possibility.

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  31. I can see why people might think this is a bummer but I also see the value in looking to the future and being honest with yourself about your best guesses. Also, you weren't trying to speak for all autistic kids. You very clearly said you were talking about Audrey. And I really enjoy your writing!

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  32. 1)I can't even begin to think that far in the future; sometimes I feel like I'm still grieving Kaitie's babyhood I never got to experience - no baby laughs or smiles etc - so I can't even begin to imagine her as a teenager let alone an adult

    2) Ditto what Dani G. said

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  33. @AllieF: Thanks so much!

    @BadBadMommy: I really do rarely think past tomorrow...Audrey started it with all her baby tummy talk...it's all her fault. Now I will return to the regularly scheduled programming.

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  34. i think about it and yes its scary since it really isn't something or anyone else can control (when they are adults) whether they pair off and procreate or not. At this point, I don't think my asd son would ever be capable of taking care of a child. but--obviously, I don't know everything and maybe he could possibly one day--i have no idea of the future--no clue--trying to have hope though.

    I do know that at 7, that when I ask him to hold the baby, he drops her on her head. he isn't capable of holding a baby or watching a baby RIGHT NOW, maybe one day...he watches her roll off the couch etc. drops her etc...

    I do know many asperger/pdd-nos parents with pdd-nos/asperger kids since I have met them. Some are quite capable. So I can never say never. But I personally hope my son finds fulfillment in a single life (some ppl are called to live life alone and thats fine. Not everyone has to nor wants to be coupled up) so this is avoided altogether anyway.

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  35. We've often pondered adult life for our 9yo Aspie. I could totally see him telling a baby to "just stop crying." When my husband and I start these ponderings I always bring us back by saying "Let's just try to get him to clean his room first.

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