It’s a tad chilly today, which is why I’m wearing a cardigan sweater.  Elvis has recently learned how to button and unbutton, which is why he’s spent much of today buttoning and unbuttoning my sweater. 

One the one hand, yay for fine motor skills.

On the other hand, it is difficult for me to move freely about the house (or anywhere) and get anything done when someone is buttoning and unbuttoning my sweater and every time I go to make a move is screaming, “NOOOOO!”  I just spent the last fifteen minutes standing in the kitchen while Elvis buttoned and unbuttoned and rebuttoned my sweater, and I could do nothing but eat the Cheetos which were just lying there in an open bag on the counter.

So as I was saying with my first hand, yay.

Lately I’ve found myself easily annoyed by autism PSA’s, including the ones by Autism Speaks, as well as the quasi-PSA’s by parents casually discussing their decisions not to immunize their children on the schedule recommended by the American Academy of Pediatrics.  A dear friend from church recently forwarded me a link to this video that Five for Fighting will donate money to Autism Speaks every time it is viewed completely.  She found it deeply moving.  I watched about thirty seconds and became annoyed.  (Sorry, Autism Speaks.  I think I probably closed the window and you didn’t get your money.  I don’t know what came over me.)  She had sent it to me and to another woman in our ward who has adult children with severe autism.  This woman replied to both her and me (as the other recipient of the link) that, with all due respect, she didn’t support Autism Speaks because they promote research that focuses more on genetic causes than what she feels is the real culprit, immunizations.  A few months ago at a ladies’ auxiliary meeting she and yet another woman with an autistic child were discussing the risks of vaccines, as well as gluten and casein, as well as standard hospital OB procedures such as cord-clamping.  She asserted that children born in midwife-assisted births don’t become autistic.  That was news to me, as my one midwife-assisted birth resulted in Elvis.  Of course, mine was probably one of those renegade, cord-clamping midwives–and there is still the matter of me vaccinating all my children on the AAP schedule, not to mention feeding them copious amounts of gluten and casein.  So never mind, I didn’t have a point.

I honestly can’t put my finger on what exactly is so annoying to me.  I don’t care if people want to have their children vaccinated on an alternative schedule.  I don’t think that’s wrong; I’m perfectly willing to concede that it might be right.  The point is, I don’t know.  What I do know is that my child has autism, and I don’t like to think about what the outcome might have been if I’d done this-and-such instead of that-and-so.  It’s not productive, and it makes me feel sad and helpless.  So maybe I just mind being reminded that I let my newborns get Hep B shots in the hospital and again when they were eight weeks old, and that I also let them get the MMR and varicella vaccines as toddlers, when that is apparently falling out of vogue among the I-don’t-want-my-kid-to-have-autism crowd.  It’s a personal problem.

I also want to make it clear that I don’t scoff at people who put their kids on GF/CF diets because the fact is that some children do make miraculous “recoveries” (if you will) from autism after going on that diet or a similar one.  I don’t argue with success.  But when I was researching the diet for Elvis, I had people telling me that I had to give the diet anywhere from three months to a year or more to really know whether or not it was going to help my child.  A three-month trial is one thing.  Heck, a six-month trial is one thing.  A year-long trial–well, I tend to think that is wishful thinking.  Elvis’s development has come leaps and bounds in a year’s time, for what it’s worth, but he–or rather, we–only lasted on the diet for about three weeks.  Might he be a perfectly neurotypical child today if I had sucked it up and thrown out all our ice cream and goldfish crackers?  I wouldn’t know.  I don’t want to know.  It isn’t that I think the GF/CF diet has no merit.  It’s just like one mother at an Asperger’s support group complained about it:  “Here is one more thing you’re not doing to help your child.”  The fact is, the diet doesn’t work for everyone, and certainly the degree of success is not uniform among those who decide that it does work for them.  And yet, when you’ve decided that you’re not going to give it–or any other alternative therapy–the old college try, it’s hard not to infer that you should be feeling guilty.

I admit that I’m contrary enough that if everyone tells me that hydrogenated oils and trans-fats and the “bad cholesterol” are going to kill me and I’m just courting cardio-disaster if I consume such things–I pretty much just want to keep consuming hydrogenated oils with impunity because between the trans-fats and the NutraSweet and the refined flours and the BHT and the phthalates, what out there isn’t going to kill me?  Similarly, what out there isn’t going to make my children autistic?  Every day the list of autism’s suspected causes grows longer, and the risk of autism gets greater.  Just a few months ago, the odds were 1 in 166.  Now they’re 1 in 150.  So far I’m two for four, and I just don’t like being reminded of the odds, especially since these commercials, though ostensibly made for the purpose of increasing the profile of autism research, seem designed to make people afraid–afraid enough to move them to action.  I’m a fan of action, ordinarily.  But I’m not a fan of fear. 

These days, when it’s normal for children to survive childhood–instead of succumbing to those diseases that have been virtually eradicated in the Western world because of widespread immunization–we as parents simply can’t relax and enjoy it; we have to be hypervigilant about every possible danger that remains.  At some point it becomes like superstition:  If I watch my children closely, if I feed them the right foods, if I buckle all their seatbelts and make them wear their bike helmets–then my children will never get sick, will never swallow poison, will never get hit by automobiles, will never be abducted or harmed by others.  If I wait to immunize my children and don’t let the birth attendant clamp their umbilical cords, they will not be autistic.  Of course no one thinks this simplistically, and the fact that we aren’t in complete control of our children’s health and safety does not render the use of seatbelts, child locks and appropriate nutrition pointless.  Similarly, perhaps it’s prudent to immunize your children when they’re older and not to clamp umbilical cords willy-nilly.  I wouldn’t know.  I just know my child has autism, and I don’t like to hear about your pediatrician, who started insisting that his patients follow the modified immunization schedule five years ago, has recently had his first and only case of autism.  If it really is his first and only case, I tend to think your pediatrician has gotten lucky.  At least his patients have.

I don’t like to hear that the odds of a child performing at Carnegie Hall are 1 in 73,000, whereas the odds of a child being diagnosed with autism are 1 in 150.  Never mind the fact that it’s entirely possible for someone with autism also to perform at Carnegie Hall.  Why are you going around telling people that their children are not nearly as likely to live out their dreams as they are to be afflicted with a neurological disorder?  Autism Speaks has changed its ad campaign somewhat as of late.  Now it isn’t so much that children aren’t likely to perform at Carnegie Hall or become astronauts.  Now it’s that the odds of a child catching hypothermia are 1 in 66,000, but the odds of a child being diagnosed with autism are still 1 in 150.  It’s not that anyone’s arguing that you shouldn’t make your kid wear a jacket in February.  It’s the implicit message that we are afraid of the wrong things.  What we ought to be fearing is autism.  Autism is really scary.

Maybe I have the luxury of finding this publicity annoying because my children are not severely disabled.  I don’t know.  I’m not going to argue that autism isn’t so bad, particularly not when I know someone whose children are severely disabled, who will never be able to live independently, will never be able to do most of the things we dream of our children growing up and doing.  There’s a growing “neuro-diversity” movement which holds that autism should not be seen as a tragedy but just another segment of the spectrum that is normal and human.  It’s hard to get entirely behind that argument when you see an autistic person struggle with genuine impairments, particularly when it’s your own child.  At the same time, I don’t often find myself wishing that my children weren’t autistic.  For one thing, I don’t know who those children would be.  And moreover, I do know that everyone struggles.  Life is struggle.  If I could wish away this struggle for my kids, what would replace it?  Would I like it better?  Yes, it’s a monkey’s-paw view of the world, but as Westley said to the Princess Bride, life is pain; anyone who tells you otherwise is selling something.  I don’t mean to be flip–no, I do mean to be flip.  I just don’t want it to seem like I don’t understand what the big deal is.  I do understand.  I’m just annoyed.  I don’t understand why I’m annoyed, I just am.

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