Saturday, May 24, 2014

Autism, Allergies and Other Things that People Have Told Me Aren't Real... on autism...

Between my news feed and email I've seen quite a few articles/comments/forum posts telling me lately all sorts of things about major aspects of our lives, that other people would like me, and other moms like me, to know aren't actually "real."  At least once a week I see other moms lamenting the fact that autism is something that's made up to make mom's feel cool about their kids (okay I really need to send the Cafe Mom emails I get straight to spam).  There's usually a post about how allergies aren't real either (how else can you explain the sudden increase?  It must be made up!), and at least a few people are usually going on about how gluten sensitivities are all in the heads of people who have them.

Usually I take a deep breath and pass on by these types of posts.  After all, these people have usually heard everything I have to say from people they actually know and they don't believe it, so they're unlikely to look twice (or think about) something that a complete stranger has said.

Still, since this is my little slice of the internet I was inspired to use my little space to ramble for a while about these three subjects, since they're all fairly important aspects of the little life that I find myself living here.

There's not much I can say about the whole "autism is something that's made up to make moms feel cool about having 'special' kids" except maybe... really (and yes, I really have heard this, this week)?

To those who have thought something along these lines... Do you really think that parent's spend hours and hours carting they're kids to doctor's appointments and specialists and sitting in little rooms watching their child go through tests that are likely to be very frustrating to them because it "makes them feel special" or makes me feel like my kind is "cool" (that was part of the claim too, that it's cool to have a special needs kid right now, like it's something people do to be on trend) in a world where I'm pretty certain most people won't think that particular diagnosis is "cool" at all.

The thing is, I absolutely didn't take my daughter to the doctor to get a diagnosis to make her "extra special."  Her Dad and I already knew that she was pretty amazing.  We already understood that she's brave and funny and beautiful.

When a doctor's appointment for tummy troubles that just wouldn't go away turned into the doctor saying that she was "100% that Mae was on the spectrum" I was shocked.  Did I feel "extra special" as a mom or that I was somehow "cooler."  Nope.  People who say this sort of thing might be surprised to hear this, but it really wasn't about me at all.

I felt mildly panicked because the word was so huge and looming and unknown.  Later, when I learned more and more that scariness was stripped away and as I began to read more and more about (and by) some pretty amazing people on the spectrum it was put away altogether... especially as my focus turned to how I could help Mae not feel frustrated in a world that doesn't think the same way that she does.

This may shock people who apparently see children as some sort of a status symbol, but most people seek out doctor's and are thankful for some sort of a diagnosis, because they're trying to help their children in a world that just doesn't seem to be making sense to them.  It isn't about "special-ness" or "coolness" (really, just writing that feels absurd) or anything like that.  It's about trying to understand and help the children that we love.

And that leads me on to allergies... and the allergy wars that have been going on of late.


  1. I think there is a group of people, like you, who legitimately have allergies, gluten issues, and Autism within your family, but there are also people who placebo effect these issues into their lives to feel special. I think the second group of people is who those moms are complaining about. I complain about the second group of people because they make it tougher for the first group (you!) to get recognition for your honest health concerns! Matt has several cousins who end up in the hospital when they have wheat and whenever I hear someone "going gluten free because it helps them sleep" or whatever, I think of his cousins and you guys and it makes me so mad! I want to yell at them to imagine what life would be like if they couldn't actually cheat on Memorial Day Weekend, like it's some kind of weight-loss diet.

    I do know a mom who spent more than a year dragging her child to specialist after specialist to get an Autism diagnosis, in the face of everyone telling her that her child was completely typically developing. She takes great pride in her "special son," bragging regularly online about her "Autism prince" and bemoaning in person how misunderstood her life is with her "special" son. And we all know someone who avoids gluten because "they just feel better without," despite the fact that they "cheat" on "special occasions."

    Anyway, I guess where I'm going with all this is just to not let those "health crisis" posers and the "health crisis poser" complainers get to you - you have legitimate concerns that lead to legitimate crises! I am in constant awe of your work ethic and your dedication to provide your family with nutritious food despite the incredible list of ingredients you must avoid!

  2. I cannot imagine anyone, ANYONE, wishing their child had a developmental problem. Whether it's physical or mental, at least in my mind, no one wants their child to have to struggle. And if some people glory in the extra attention the developmental problem brings, well, perhaps they are just trying to cope by acting "super positive" or maybe they love the pity. I don't know. If some people these days are using autism or being on the spectrum as an excuse for their intellectually average (or below average?) children, well, what can you do?
    Please don't take offense at people who are exasperated by the "acting" they see in some of their friends and acquaintances, or think their generalizations apply to you. You know what you face, and how you are hoping for the best possible outcome for Mae. And you know how food affects your kids too. Let the bloggers talk and just ignore them.
    God bless. ~ Bonnie

  3. I think people mostly roll their eyes at those who self-diagnose when it's obviously just a faddy thing they do for attention. These people don't even understand what gluten is.

    The truth is that most people will feel better and lose weight cutting out gluten because that automatically negates so many refined carbohydrates and sugary treats.

    The study I recently read, the one going around FB, says that there may be other compounds in food causing people to feel unwell after eating. So, the feeling poorly isn't entirely made up - it's just wrongly attributed to gluten.


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