Whose Planet Is It Anyway?

Saturday, June 23, 2007


I got a comment from an autistic woman who is wondering if there is any way to determine the chances that she will have an autistic child, given that her fiancé also has some autistic tendencies.

As far as I know, no studies have been done that would allow such a determination to be made with any reasonable degree of certainty. (Until quite recently, most doctors and scientists did not even acknowledge the existence of autistic adults who got married and became parents.) And genetic testing, at this point in time, is very crude and inaccurate.

Of course, like most questions, this one is much more complex than its literal or surface meaning. I have to wonder: What does it say about our culture that this question is even being asked? My personal perspective on this issue comes from being part of a family where autistic traits are so common that they're seen as just part of ordinary life. In my extended family, some kids are early readers, some wander off if they're not watched closely, some enjoy sports, some are nature lovers, some arrange their toys in precise patterns and don't let anyone touch them, and so forth. We don't sort our family members into different categories based on these characteristics; it's just part of who they are.

As a result, I've never drawn the sharp distinction between autistics and non-autistics that many people do. I've known many autistic folks in real life, and to me, they just seem like ordinary human beings, not all that much different from anyone else.

To make myself clear, I'm not arguing that the autism label has no value or that it should be junked. It's useful to the extent that, in describing a general pattern of cognitive and behavioral characteristics, it enables people who have such characteristics (or whose children do) to gain access to potentially helpful information about educational methods, daily life strategies, and so forth. However, when we identify children as autistic, we should keep in mind that there is just as much natural developmental variation among autistic children as there is among any other group of human beings. They don't all have identical traits, and they don't all have identical needs. The label should be just a starting point to provide some guidance in discovering their individual strengths and weaknesses.

I'm aware that there are many people who would never consider eugenic abortion but, nevertheless, would want genetic counseling and/or prenatal testing so as to know in advance their child's chances of being autistic. That's quite understandable, given how poorly adapted our society is to the needs of the autistic minority population, and I wouldn't fault anyone for having that point of view.

Still, there are other questions that prospective parents might want to ask, such as these: What are my child's chances of being able to attend a school where he or she will be able to flourish, regardless of neurotype? What are my child's chances of being able to pursue a career that is well suited to his or her individual talents and interests, without discrimination of any kind? What are my child's chances of being able to obtain appropriate accommodations for his or her differences or disabilities, in the event that such accommodations become necessary for any reason? And what can I do, right now, to change society in such a way as to improve those chances?

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  • I think about those questions a lot when I hear about there already being "limits" to Charlie's life: Who knows what will happen to any child? Will they make it through high school with so many peer pressures? Not to mention college........ I've been talking to students who will start at my college in the fall and also to their parents----I've been thinking that there is no guarantee, as regards finishing college (not that I say that! it's my job to help them get through), getting a job, being "independent."

    By Blogger kristina, at 11:50 AM  

  • I remember when I was pregnant and some test came out strange and they advised me to go get a amino test . I was terrifed.
    Not because I was afraid of having a child with a genetic defect but I was afraid that the amnio test would cause me to miscarry. I had already had one still born baby and one miscarriage and I wasn't about to gamble with a my third pregnancy.
    My daughter was fine when she was born.. she had speech delays and some other autistic traits so one doctor said she was not on the autistic spetrum and another dr dxed her with pdd-nos. She doesn't qualify for that dx anymore and is in regular school with out the 504 plan she had or the speech therapy she once had.. shes 13 and getting all A's and B's in mastery level classes.

    My son on the other hand has a dx of pdd-nos and still has an IEP with resource class, and will have a couple of special ed classes .

    As a Mother dxed Aspergers I couldn't really raise a child on my own in my particular case.. I have a NT husband who has taken a strong role in interaction with my son and daughter as far as schooling and just over all parenting...
    I don't have the high IQ that some people dxed with Aspergers syndrome have so things like helping with homework are out for me.. I had trouble understanding homework from when the kids were 7 and 8 up.

    I guess I think at least for myself that people should fully understand what they are getting into when they decide to have a child... realistically that's not always the case though and many women including myself have gone into parent hood blind to the demands that raising children takes.. but hindsight of course is always 20/20. :-)

    By Anonymous Anonymous, at 12:24 PM  

  • vicky -- as an aspie with a supposedly pretty decent IQ (for what little that's worth), i can tell you that is NOT what makes a person ready for parenting. homework, maybe, but if that were not either parent's thing, they could always borrow a neigborhood geek for that. parenting, not so much. having some kind of balancedness and selfcontrol and unselfishness (and maybe capacity for organization?) might be the factors. my husband is a bit younger than me and has an unmeasured IQ (they didn't go in for that much in his country, one of very few things they got right, psychologically speaking!) and is far more ready emotionally/whatever to be a parent than i am...

    By Blogger n., at 3:24 PM  

  • I've read this post twice through and am earmarking it for my husband to read when he gets home. Some thought provoking insight there.

    By Blogger mumkeepingsane, at 4:25 PM  

  • natalia wrote:
    (vicky -- as an aspie with a supposedly pretty decent IQ (for what little that's worth), i can tell you that is NOT what makes a person ready for parenting.)

    Hmm,I had to read your post about 5 times to understand what you were saying.

    I didn't say that IQ is what determines wheter a person can be a "ready" for parenting.

    What I was trying to say that a person who is thinking about having children should look into all the ramifications of what parenting is going to be like for them. But I have no set ideas about what makes a perfect parent or anything like that..
    I think what I was thinking about is stuff like those classes where a person or teenager carrys around a baby 24/7 and has to respond to its needs at very inconvient times..

    Having cognitive limitations for me has limited my abilitys to teach but not to love or nurture.
    Having cognitive limitations makes it difficult to be self supporting and add in social cognitive difficultys just adds to the mix.

    By Anonymous Anonymous, at 7:28 PM  

  • My last trip to the OB/GYN we were knocking around the possibility of getting pregnant again. Everybody wants a girl in our brood. We were concerned about the GD I get... but all the OB wanted to talk about was Joey's autism and offering me reassurances that it was only 10% likely that I would have another autistic child.

    I thought the visit rather surreal. I wasn't worried about that at all. Whether the child was autistic or not is not a big deal, making sure that we would both be healthy at the end of the process if I needed a lot of insulin was, to me, a far more pressing issue.

    Strange what people think others worry about.

    By Blogger Joeymom, at 8:11 PM  

  • I remember when I was pregnant with my second child, the things people would say to me. "You're so brave for taking this chance." One time I tried to explain to a friend that I figured it would be fine, because if I had an NT child that would be okay, and if I had another ASD child...and then the friend jumped in to say "it couldn't be worse!" ARGH. It was so awful, yet revealing, to understand how others thought of my child and my life. It's sad, really. If such people were lucky enough to have an autistic kid like mine their lives would be enriched in ways they can't even imagine.

    By Anonymous Anonymous, at 8:41 PM  

  • great post -- I've printed it out to talk with people...

    By Anonymous Anonymous, at 6:54 PM  

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