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The Blame Game

May 17, 2012
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Today’s post is from regular reader and commenter Karen, whose comments on the media’s coverage of the obesity/autism research inspired this week.

I am known by many labels: daughter, sister (both biological and adopted), wife, mother, lover, friend, blog wife, singer, musician, geek, and, yes, FAT.  I may hold some labels closer to my heart than others, but they are all me.  The most important ones for this exercise are mother and fat.

Perhaps a bit of explanation is needed.  My beautiful, funny, looks-exactly-like-his-father-so-I-question-if-I-even-donated-any-DNA, incredibly sweet, amazingly smart, and (for the sake of this post) autistic son was diagnosed as such when he was 4 years old.

That was 5 years ago.

Unlike many parents, upon hearing this diagnosis, I didn’t burst into tears.

I didn’t shake.

I didn’t panic.

I didn’t even scream to the heavens, “WHY US?!?”

I quietly nodded and started working on the next step: getting him the best education we could afford, given our incredibly limited resources.

I was damned lucky. At the time, my mother was a special needs elementary school teacher and my mother-in-law taught regular elementary education. So I had some pretty freaking awesome backup for this new journey. My unexpected trip to Holland wasn’t going to turn me into a contestant on my own personal episode of Fear Factor because I had (and have) awesomeness on my side. Sure, there were questions of what the hell we do from our position, but that’s what research is for.  That’s what experts are for.  I was on a roll!

Ok, so I don’t always roll with the punches as well as I think I should.  As I posted on Facebook recently, “Most days, autism and I walk hand in hand with an understanding that while things are difficult, they could be far worse.  However, today autism decided to hit me over the head with a 2×4 repeatedly.”

Yeah, there are days when I bemoan the life my little family knows. Sure, I’ve wished my awesome little gibbon was neuro-typical, but then I’ve stopped myself and realized that if he was neuro-typical, then he wouldn’t be MY little gibbon any more.  And, boy howdy, do I L-O-V-E LOVE that child.  He is by far the absolute BEST thing I have ever done with my life.

But this post isn’t really about him.

This is about me.

Because Monday, April 9th, 2012 brought news that made me sob.

What the hell happened on that day, you ask? Simple. As I sat in my recliner, listening to my son repeat the same phrase for what felt like the 100th time in 10 minutes, a story came on the Today show. They had linked the prevalence of autism to obesity in mothers.

The first time I heard the story, I set down my cross-stitch and just stared at the TV in befuddlement. Wait… I was “obese” when I was pregnant. Sure, I had a crap-ton of other medical issues unrelated to obesity going on at the same time, which caused a great deal of complications, but I WAS OBESE AND PREGNANT!

After the story passed, I looked over at that precious child, smiled that “if I hear the same thing again I’m going to want to scream, but I won’t” smile, and tried to put it out of my mind. I mean, I’m a pretty smart woman and I know that correlation NEVER equals causation. I also know that science has yet to find a way to permanently lower a person’s BMI into a “healthy” range.  I also know that BMI is a total crock of… well, you know.

The second time I heard the same report, I think I made sure that my son wasn’t looking in my direction, and then did my “bird dance.”  This dance is easy to do and dancers of all skill levels can master it.  You stick both of your middle fingers up in the air and you wiggle your butt back and forth, alternating which hand you’re thrusting toward the offending news report.

Personally, I’ve found that I almost exclusively reserve my bird dance for offending news reports.  I suppose it could be used in other circumstances, but if you do so, please do not blame me for the consequences.  🙂

By the third time I heard the report, I couldn’t take it anymore (I guess the third time really was the charm for me).  That’s when the “blame game” played out in my head.

Now I need you to realize that I do not think that autism is the end of the world. My son is AWESOME and he finds new and creative ways to crack me up, leaving me in tears laughing. He can also be one of the sweetest little boys I know (although I don’t know if it’s the autistic child, or the 9-year-old boy, who no longer wants me to kiss him on top of his head when I walk by).

I do, however, realize that he has a difficult road ahead of him to navigate and that I am trying my best to help give him the skills to navigate that road without hitting too many potholes along the way.  Life isn’t easy for him, and I really wish it were easier, but hell, I wish life were easier for me!

As a parent of an autism spectrum disorder (ASD) person, there are times when I play the “blame game” and become a willing participant because I want to know what caused this difference and find better ways to help my child navigate this world that so often seems hellbent on throwing up as many roadblocks for him as possible. It’s not about a “cure” or a “fix” for my husband and I, it’s about helping our son have the best life he can possibly have.

I admit that I was thoughtless because I made the choice to play the blame game and begged to be tagged “it.”  I let these reports point a finger at me and scream, “You screwed up as a parent!  You are such a horrible person!  How dare you get pregnant while you were fat?!” I bought into the stupidity of the media and didn’t do my research.

And the saddest thing is that nobody ever wins the blame game. Everyone is a loser as soon as they start playing: those who place blame are losers because it’s easier to blame someone else than to try and figure out the actual reasons for why things happen, and those of us who accept blame are losers because we should know better. And for those who don’t know any better right now, the responsibility lies with those of us who do know better to lovingly guide them back into the land of understanding and support.

Media reports on research, such the one I watched on April 9th, are dangerous for many reasons. Not only do these reports trick us into playing the blame game, but the language is so muddled that it can confuse even the most critical of thinkers. Unless you can separate yourself and your emotions from the data set before you, then you run the risk of driving yourself insane. I wasn’t able to do that at first, and I am sure that others experienced the same problem.

If any group understands the dangers of media reports on research, it’s Fat Acceptance.  We get dumped on and blamed for so many (if not all) of the world’s problems.  The fact that obesity hitched a ride onto this study, bringing it to national prominence, is a prime example of how the media and society tries to blame the obese for every little thing they view as wrong with the world.

The study sucked, and the media’s muddled description of that study, which caused too much confusion and anger, sucked even more. Basically it all reeks of a game that I, and I hope you all, don’t want any part of.

We never lose if we never deign to play.

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19 Comments leave one →
  1. May 17, 2012 10:46 am

    What a great post, and what a truism it is that nobody wins this blame game. I’m not a parent, obviously, but I really respect parents like you who love and adore their children regardless of neurology. For all the crappy parents I’ve seen, it’s the ones like you that we need more of.

    • klrtinkerbelle permalink
      May 17, 2012 11:05 am

      CC, thank you. Your comment seriously made me tear up.

      • May 17, 2012 12:19 pm

        I meant it. I know we had a bit of a difference of opinion, and I have a tendency to be blunt (one thing I can and will blame on AS, heh), but I don’t have some kind of rampant disdain for every parent who’s scared for their child’s future. I think that makes one a good parent, to make sure their child gets the help they need as well as the freedom to be themselves.

        Just, I’ve seen (and experienced to some degree) what happens when a parent overrides their child’s opinions or decisions, or thinks they can’t have any because they’re nonverbal, or just can’t be arsed to try to understand them. We speak Japanese in an English-speaking world, to be metaphorical. Anyone, given time, can learn Japanese. Some people just go “it’s too hard” and put the book down, and some people work at it and get fluent. The truly good parents get fluent, and that sure seems like what you’re doing.

  2. May 17, 2012 11:44 am

    #1 cross stitchers unite…high five!
    #2 yay a fellow bird dancer!
    #3 i hate the way stupid anti-fat rhetoric pops up in the guise of “medical reporting” on tv. they never bother to tell you who the hell FUNDED the study now do they? Or the methodology? ect ect…no you just get eh 1-2 min blurb that OMG OBESITY then its off to the weather, or what kim kardashian is doing or what have you.

  3. May 17, 2012 10:23 pm

    Thank you, Karen, for representing the perspective of the parent who rises to the challenge and raises their child in a home of love, patience and understanding. Your son will certainly have a bright future with the foundation you have given him. Thank you so much for sharing your story and for reminding us of the effects that these over-simplified news reports can have on the parents.

    Peace,
    Shannon

    • June 14, 2012 7:27 pm

      Amen to that, Karen! How I respect you for “not bursting into tears” when your son was diagnosed and instead just taking it in stride to do the best possible job raising your son. Yes, that was indeed awesome!!!

  4. Adelene permalink
    May 17, 2012 10:56 pm

    I’m seeing some rather subtle ableism, there. If the headline was ‘maternal obesity causes lefthandedness’ or ‘maternal obesity causes blond hair’, your reaction would have been more along the lines of ‘huh, interesting trivia’, right? Why should autism be different? (I will grant that the world isn’t set up conveniently for autistics – I know; I am one – but it’s not set up particularly conveniently for left-handed people, either, and that’s still not a big deal.)

    • May 17, 2012 10:58 pm

      I don’t understand what you mean. Who are you calling ableist? I have really limited patience with that term, so I want to make sure I understand what’s going on before I reply one way or the other. Are you seriously comparing the minor inconveniences of left handed people to the crap we put up with as Aspies/autistic people?

    • klrtinkerbelle permalink
      May 17, 2012 11:05 pm

      Adelene, I’m sorry you feel that way.

    • MacLaine77 permalink
      May 17, 2012 11:35 pm

      While I somewhat understand what you are saying in this matter, Adelene, there is no able-ism inserted, subtly or otherwise, in this post. What you have just done is essentially turned this very well written and heartfelt posting into somewhat of an attack on the autistic and make an accusation that the author has passed a judgement on their ability to function in society. While there is sensitivity in the issue of autism and those who have autistic children, without a doubt, there is no prejudice coming from the author, and there is more so coming from the media’s constant bashing and rush to judgement on those who are obese. What Karen is representing in her post is the way such an unfortunate attack on the character of those who are obese and have autistic children. It would be no different that I child born without a limb…while the parent would love that child dearly, do what they can to help them grow and succeed, if they were all of a sudden hit with a report that some sort of health issue the mother or father had was the cause of the missing limb, it would be quite a rough spot for them. It is in no way a thought that the child is not normal, is not able to function and grow, or to thrive and succeed in life as anyone else…however the what ifs and the guilt will still be there regardless. I would highly suggest you stop attempting to read into things words and feelings that are not there and try to understand what the subject matter is about before calling someone out on an imaginary character flaw.

      • Adelene permalink
        May 18, 2012 2:11 am

        1) I didn’t say or imply that it wasn’t heartfelt; it’s entirely possible for a sentiment to be both of those at the same time, though most of the really clear examples I have of that would probably do more harm than good if I brought them up – I expect that you’d assume that I meant to compare the two situations in more than just that one specific way, and take offense.

        2) *isms are not intrinsically character flaws. We live in a society where *ist messages are a constant fact of life; it’s hard *not* to pick those ideas up, usually without even realizing it. I don’t know about here, but in the social-justice circles I tend to frequent, pointing out when someone has accidentally picked up such an idea is done in the context of believing that the person does want to actually not be *ist, and is generally a sign of trust and respect. Perhaps I shouldn’t have made the assumption that she actually wants to be not-ableist, but that *does* seem like an offensive thing to not-do.

        3) The idea that a child being autistic is worse than that child being neurotypical seems very clearly ableist to me – if you actually disagree with this I’m going to be very confused and need further clarification in order for the conversation to get anywhere, though I may not be particularly inclined to continue the conversation at that juncture. Assuming we’re on the same page with that, though, I’m not sure what your objection is to the rest of my point – it doesn’t make sense to feel guilty about causing something that’s neutral or positive, so the fact that she felt guilty pretty clearly implies that she thought of it as negative, without any ‘reading into’ required.

        • mystifiedmom permalink
          May 18, 2012 8:03 am

          Adele, I didn’t get the sense that Karen was making a true value judgment as to whether or not autistics are better than or worse than. I got the sense that the diagnosis was difficult because it presented a challenge that had not been anticipated. It wasn’t a good or bad scenario but rather a situation where she realized that there would be a lot of work ahead of her to make sure that her son has the best life possible. While she may not be ableist, it would be irresponsible for her to pretend that it doesn’t exist. It would be irresponsible for her to think that their lives would be completely unaltered by the diagnosis. It’s not a less than or greater than situation. It wasn’t a value judgment.

          If you know that your child is going to grow up facing extra challenges because of something that he or she was born with, that is going to cause some concern. I have four daughters. Would you consider it sexist if I acknowledged that we are going to face some challenges because we live in a society that tends to be patriarchal and devalues women? That doesn’t mean that I wanted boys any more than it means that she wishes that she had a neurotypical child. It means that she is being realistic and doesn’t have her head buried in the sand.

        • MacLaine77 permalink
          May 18, 2012 8:32 am

          So the argument is that you believe Karen is being ableist without actually intending to be, but it doesn’t seem right to not think the way she thinks? Okay, we’ll build off of that then. What is an ableist? One who prejudges a person with a disability as someone who cannot succeed or thrive in life as a normal person. I am confused as to how feeling guilt in the feeling that because of a condition that will, in this society, make growing up difficult. The guilt does not come out of a desire for the child to be “normal”. The guilt comes from the idea that her health somehow affected a condition that will certainly present more challenges growing up in society, making friends, be a cause of potential bullying in school, etc. You were correct in saying that the world is not really autism friendly, however to compare it to merely being left handed is not quite the same. I am an introvert, I’m ADHD, I can be a little OCD at times. That in and of itself made life more difficult. My mother expressed guilt before, not because of my conditions mind you because such diagnoses were rare back in the day, but because she felt she had failed as a parent because I was dealing with severe bullying in school, and had difficulty making friends.

          Are you a parent, Adelene? Do you understand what it is to feel that you failed your child somehow? That it was because of you that they are having a difficult time meshing, thriving, succeeding? That it was because of you that they are seemingly failing every class? Parental guilt that you were not able to successfully create a slip and slide made out of butter to slide smoothly through life, not dismay that your child is not normal. Parental guilt is not ableism, it is a typical thing. I think you have confused the two.

          • May 18, 2012 9:26 am

            Excellent comment, MacLaine77 (and welcome to Fierce Fatties).

            My mom still feels guilt for the way she raised myself and my sister because we’ve had a more difficult time with life (my sister because of my mom’s hard-partying years as a teenage mom and for me because my ADD made my life similar to yours, MacLaine, pre-diagnosis). Parental guilt is not ableist, it’s the sign of a person who cares deeply about their child’s welfare and happiness, so much so that they feel responsible for even those circumstances that are beyond their control.

            Peace,
            Shannon

    • May 18, 2012 8:21 am

      I find it rather offensive for someone to judge the feelings of other people. The fact that she felt guilty is nothing more than a natural response to being told that her child’s diagnosis was her fault. Left handed people may not be accommodated in our society, but they certainly aren’t stigmatized like autistic people either.

      Your attempt to turn a mother’s heartfelt admission of grief and self-doubt into a political issue is rather sad. If you think Karen is ableist because she felt guilt upon hearing that news report, then you are stretching the meaning of ableist beyond its capacity.

      I detest this kind of dehumanizing rhetoric. Perhaps you are a staunch advocate for the disabled and are working to make the world a better place for those with special needs, but if your activism lacks the compassion or empathy to appreciate Karen’s situation, then you are not an activist I can respect.

      Activism without empathy is just laws without justice.

      Peace,
      Shannon

  5. melissa permalink
    May 17, 2012 11:33 pm

    karen, that was the most amazing description of your life and i am honored to be your friend 🙂 keep your head high and remember it is in no way your fault!

  6. klrtinkerbelle permalink
    May 18, 2012 12:25 pm

    Alright. Me. Woodwork. Out. Now we get to see what it looks like when I write and DON’T have my lovely editor making sure I’m not making silly grammatical errors.

    I am not pleased with the implications of what has been said about me. Adelene, I understand that you are probably coming from a place of pain with your accusation, so I will try my best not to increase that pain.

    Those who have come to defense of my words are on the right path of understanding why I wrote what I did. I never said that I felt that my son being autistic was worse than being neurotypical. You have read far too much into my parental guilt and apparently not read enough of the glowing praise I had for my son. Either you simply did not understand my praise as such (although I’m a bit lost as to how anyone could have missed it), or you chose only to see negative in what I had to say. Either way, I urge you to please re-read what I originally wrote.

    Now, onto the true matter at hand: Parental Guilt. Parental guilt is a vicious monster that attaches itself to one the instant they find out that a child will be coming into their life. I am going to assume (Danger, Will Robinson! Danger!) that you are not a parent at this moment. If you were then you would surely understand how parental guilt will rear its ugly head in some of the strangest of ways. The instant you find out that a child is coming into your life you are hit with the crushing realization that you are now in charge of not fucking up a human life, which is quickly followed by the even more crushing realization that you will, indeed, fuck up this human life in some pretty amazing ways. The way I see it, if you’re parenting and you don’t have at least a small shred of guilt over things that you have no control over, and that isn’t nearly as horrible as some others or yourself make it out to be, then you probably aren’t parenting right.

    You have mistaken my parental guilt for ableism. It may not make sense to you to feel guilty about something that is neutral or positive, but believe me, as a parent, guilt is a whole different monster than your everyday “Shit, I broke my mother’s priceless vase” guilt.
    I do NOT view my son as anything other than the blessing he is. If you think that I think that my son is less than because of his autism, then you clearly missed the part of my post that talked about the fact that in the rare moments that I might consider wishing he was neurotypical I stop myself, because I realize that he wouldn’t be MY child any more, and that I love that child with every ounce of my being.

    I hope that this has cleared up some of the confusion. In the end though, the fact remains that all you know of me is a single guest post on a blog and a comment on that post, and you do not, in fact, truly know me. Those who do know me know the truth of my character, the strength of my love, and the depth of my pain.

  7. May 18, 2012 12:44 pm

    I was really hesitant to say anything, but I will just say this: calling someone ableist almost never does anything but make them defensive. I really, really understand being quick to jump on someone who seems to insinuate that autism is something to be upset over – I do it a lot, because it’s not a death sentence, it’s not a curse, it’s not an insurmountable wall between parent and child or friend and friend or whomever. But I’ve learned, and I’d like to think I can use, the knowledge that there’s upset because you’re scared, and upset because you’re disappointed. Karen seems to be saying that she got upset because she was scared (correct me if I’m wrong, obviously). I don’t think that’s ableist at all. I think it’s human.

  8. May 29, 2012 3:03 pm

    When I first found out I was pregnant with Rowan, my then husband told me directly that if this child was not “mentally perfect” or had some “mental disability” that he just “couldn’t love it.” He tried to get me to abort. I refused. After Rowan was born, I divorced his ass. VERY quickly.

    I remember hearing these reports of maternal obesity=autism. Aside from the obvious reasons, I don’t buy it. I live in southern WV. Almost EVERYONE is obese, or at very least overweight. I live in a very “fat” state. Not every fat woman that gives birth here ends up with an autistic child. As a nurse, I’ve seen plenty of obese women give birth to sweet babies, and I see many of them when I take my boys into their pediatrician, and they are still neurotypical. That’s my observational experience.

    My personal experience is rather different. I was 200 lbs (give or take) when I got pregnant with Rowan. I gained 30 lbs, developed pre-eclampsia, and ended up having an emergency c-section because after they started the induction, I did not progress. Turns out he had the cord wrapped around his whole body, and his neck a few times. He had excellent APGAR scores, and did really well…until I noticed that he wasn’t responding to his name many months later. He was diagnosed officially at 18 months, began Birth to Three services, and got a second confirmatory diagnosis at 3 (on his birthday, no less). He’s doing VERY well now, has FINALLY made a few friends (though his interest in initiating a play date is rather low. Once he’s there and playing, he’s actually started initiating, but not until he’s already in the situation), and is in a mainstream class in elementary school. I am one of the luckier moms in that I don’t have to deal with physical aggression (at this point, I don’t know what puberty will bring), and he’s very talkative (finally – he was almost 4 before he became verbal).

    When I had his half brother, Xander (and YES, my husband and I named him after Xander Harris from Buffy. We’re geeks, and wear that badge proudly – if we were to ever have a daughter, he insists on naming her Amelia – as in Amy Pond from Doctor Who), I was 264 lbs at my first OB appt, and when I gave birth, I was around 260. Xander is neurotypical. I was fatter when I had Xander, and he’s perfectly normal (well, a slight language delay due to several ear infections, but still).

    I know how you feel about the reports, I’ve been there too. And I have my own bird dance, and Rowan’s seen it and thinks it is hilarious. He knows not to do it himself, fortunately. He prefers farting at things he doesn’t like…and things he does because he thinks it’s funny. What little boy DOESN’T like farting, though, right?

    And no matter how he squirms….I’ll STILL give him lots of hugs and kisses, even if it embarrasses him to the dickens and back because he’s still my baby boy, no matter how old he gets (or how loudly he tells me to call him “big man” instead of “little man”.) 🙂

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