Autism: Not actually worse than death

22 Sep

So I was reading about a measles outbreak caused by parents choosing not to vaccinate, and how kids have died of it and it made me so, so sad. Sad for those parents, sad for those kids, sad for the medical community that has not done a good job countering the message of that long-disproven study and Jenny McCarthy.

So, OK, here are my unpopular thoughts on the subject of vaccines.

When I tell people that my daughter has autism, I get all kinds of questions, and I think that’s fine. I appreciate curiosity, and I am happy to try to educate people as to the realities of living with a child with autism. A common question is, “Is she pretty high-functioning?” (They are expecting me to tell them that she is, but in fact she isn’t, so I answer, “No.”) Another is, “Have you tried the gluten free casein free diet?” (No. Her diet is really limited as it is, and so, yogurt is one of her main protein sources for now, so, no. Not now.)

But one that really irks me is, “Did you vaccinate her?”

OK, first of all, I find it kind of shocking that anyone even has the gall to ask me that. I mean, why don’t they just come out and say, “But it’s your fault, right?” Because they want to believe that autism is controllable and preventable. Like if I were running down the street in a miniskirt and a tight t-shirt that said, “rape me,” and then someone did, well, that would be my fault, and if I hadn’t done those things that made me so rapable I wouldn’t have gotten raped, right?

Yeah, no.

But the other thing that galls me about that question is how ubiquitous the idea that vaccines cause autism in the general, non-hippie population. Putting aside the science for a minute, because I will leave that to smrter people than I, let’s just say, for giggles, that vaccines DO cause autism in some kids who are predisposed to get it (even though it doesn’t.) Let’s say it was scientifically proven that the MMR vaccine DOES cause autism (even though it doesn’t.) Even though this has been tested and tested again and there is absolutely no evidence at all that vaccines cause autism, let’s say, for now, that sometimes. Let’s say, in a really low percentage of cases, like 1% of cases, the MMR vaccine causes autism, even though it doesn’t.

Are you with me?

You know what not getting vaccinated can cause? Death. It can cause death. Google measels. Google mumps. Google rubella. Those are the diseases the MMR vaccine is meant to prevent. Since 2007, over 1,000 people have died of preventable diseases, diseases that vaccines would have prevented.

My life is no picnic. I’m sure your life is no picnic either. When my daughter was tiny, she was very, very ill for a long time. I have done my time with sick kids. I have sat helplessly and held her hand while machines breathed for her. I have consulted with oncologists, filled out paperwork to put my daughter on the waiting list for a new liver, and I have stared down the dark hole that is life without her. And in those dark days, if you had said to me, “She’ll live but she’ll have autism,” I’d have cried with joy. Really. Compared with death, autism is nothing.

My daughter does not have an easy life. When she has a cold, the sensation of moisture on her face is so distressing to her because of her sensory issues that she can barely function and she gets so, so sad. She is almost seven and is just now learning to eat solid foods. She sings all day, and tunes out the world, and it is hard to focus on school. Sometimes she is so busy tuning out that she forgets to go to the bathroom, and she poops on the floor (In fact, that was happening as I typed that sentence and I had to put the computer down and go assist on the potty and clean up.) And things that come naturally to my probably neurotypical son are a struggle for her. It makes me sad for her that she doesn’t have it easy. (He can recite parts of the alphabet already!! What the what?!)

But there are also moments of pure joy. When she does something new. When she works hard at something and gets it. A few weeks ago, we went to my mother’s synagogue, and the cantor played some upbeat happy music. My daughter was shaking in her chair and when I told her she could go dance, she leaped up and danced her heart out. She was so happy, and so unselfconscious. I wouldn’t trade her for any neurotypical kid. I felt so proud then, my beautiful daughter, dancing the dance in her heart. I think every parent experiences those moments of pure joy.

I do not consider my daughter’s life a fate worse than death, and even if vaccines DID cause autism, I’d still vaccinate her. Knowing what my life is, knowing what her life is, knowing what we go through, I still vaccinated my son. And even though I don’t believe vaccines cause autism, there was still that moment of doubt, that moment of “what if…” But I did it anyway. Because I do not want my children to get a horrible disease, and possibly die. Because life with autism is hard, but it is not actually worse than death.


6 Responses to “Autism: Not actually worse than death”

  1. Jackie Wolk September 22, 2013 at 7:02 pm #

    Wow. I love you for posting this. I could seriously lift this word for word and apply it to my own kiddo on the ASD. (All except for the medically fragile part, and I ain’t even gonna try to feel your pain on that one. I’ll spare the “I can’t IMAGINE how hard that must be for you! I don’t know how I’d manage!” remark. Chuh. Of COURSE you would manage, you boob – one leg at a time, just like everyone else. Now shut up and make us a casserole. I’m too damn tired to cook anything.)

    When I get asked the vaccine question, I reply with an emphatic NO. I vaccinated E and I would do it again. Vaccines cause autism like…oh, I dunno, farting at exactly the same moment as a car collision causes accidents. “Huh. So, when I cut the cheese, two cars hit each other. I must therefore never fart again.” The consequence of not farting, however, causes you to eventually explode like Mr. Creosote from “The Meaning of Life”. Not only do you kill yourself, you harm a whole lotta innocent bystanders in the process.

    Don’t you feel better knowing that tooting causes more good than harm? I know I do!

    The GF/CF diet question? Negatory. We did that for like two years when I was still in my silver-bullet phase of parenting. It made me incredibly controlling (eg, WHAT ARE YOU DOING GIVING E. A TRISCUIT! WE’VE HAD THIS DISCUSSION! NOT A SPECK OF WHEAT IS ALLOWED OR ELSE I HAVE TO RE-START THE WHOLE PROCESS! GREAT. TWO TO SIX WEEKS OF TANTRUMS WHILE SHE DETOXES) and E incredibly constipated – which you can imagine did wonders for her toilet training process. It was a great distraction from the painfully slow progress that comes from therapies and spec ed and those little fucking laminated pictures on Velcro.

    Another big steaming NO to the level of functioning question. E is moderate, I guess, if you want to get into the whole bogus “my kid can pass for normal better than your kid” hierarchy. Among DH’s cousins is a 13 year old boy with ASD, and Aunt Erma always puts the qualifier that her son is a “HAYH FUNCTIONIN’ AUTISTIC” when she talks about it. Whatever. He’s made a crapload of progress, even without the benefit of early intervention like E’s had. He can actually have a conversation – not always in an indoor voice, and not always on the most appropriate topics, but HE STILL HAS AUTISM. He just develops quicker than my kid.

    Plus…at least E plays soccer and rides a scooter, instead of eating peanut butter and playing video games. (Had to get that little dig in, didn’t I?)

    xo – J

  2. Rachel Shea Beck September 23, 2013 at 12:05 am #

    This is so wonderful. Funny, sensible and beautiful. Your kids are lucky to have you for a Mama!

  3. E September 25, 2013 at 2:56 pm #

    Thank you for posting this!

  4. reverend61 September 28, 2013 at 9:52 pm #

    There’s nothing you can really say to that, is there? Apart from, you know, well done. You’re absolutely on the ball with this – I say that as a father of three boys, two on the spectrum, and all of whom had the MMR. Just the other day a colleague said to me “And, of course, there’s this research that links vaccines and autism” and I had to gently remind her that

    a) the so-called research went nowhere;

    b) MMR is at the very extreme end nothing more than a hypothetical catalyst for the awakening of dormant autistic genes; I simply don’t know and time will tell;

    c) even if a) and b) weren’t true, the risk – as you’ve so eloquently outlined – is worth it. Besides, compromising herd immunity is basically selfish!

  5. Jackie Wolk January 9, 2014 at 6:42 am #

    oh yeah, and one late comer to the party…but it warrants sharing bigtime

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