A couple years ago when I had the idea that the Roc might be on the autism spectrum I started looking for information on the internet and was over whelmed.  So much information.  So many conflicting opinions.  Where to start?  Who was/is right?

I started reading the message boards on the Autism Speaks website and was stunned by how cruel the posters were to each other and especially to those who were new to the diagnosis, just looking for some guidance.  I quickly logged off that day.  It was my first glimpse of the division within the autism community.  The chasm that opens up between those with differing opinions on the cause(s) of autism, whether there is a “cure” or not, differing opinions on therapies, biomedical interventions, to label or not to label, whether we should say “autistic” or “with autism,” and don’t even mention vaccinations.  The division that exists within a community of parents all trying to do the best for their children.

I took what I could from the Autism Speaks website and moved on to others and started borrowing and buying books of my own.  A year or so later I started to blog about the Roc, mainly for our family and friends, everyone living in a state other than the one in which we currently reside.  Through blogging I found other autism mommies and a sense of community and most definitely support.  I love to read about their children, cheer them on, and hopefully give some strength through rough times.  I enjoy posting about the Roc’s accomplishments and smile when I read comments and know that there are people who “get it.”  Often I learn about new on-goings in research, therapies, etc. through some of my favorite blogs.  But sometimes I am still blindsided by “us vs. them” mentality that exists within this community.

I have been reading some new blogs lately and have been reminded of just how deep that gulf between autism parents can be…and I can’t seem to stop thinking about it.  The callous way some will sling insults from the safety of their keyboards.  The judgmental words sit solidly in my chest and stay with me longer than I want them to.  Isn’t that one of the things we rage about when we speak about the awareness we want for our children?  The judgment we feel is passed on them and thus our parenting abilities?  Certainly I cannot be the only one who finds this ironic?

I know it will not change in the near future, but I just wish it wasn’t so hard for people to find common ground.  The common ground that we share as parents of children with autism.  We all have unique children that deserve their place in this world.  We are trying to do our best by them.  We may go about that in different ways, but that doesn’t necessarily make one better than the other.  Just different.  What works for one child may not work for another.  We know our own children, their histories, which are entwined with our own, and we each learn the ways to help them live their best life.

I am trying to do my best by the Roc.


11 thoughts on “Division

  1. I, too, find it strange – and disappointing. It’s so negative.

    “We are trying to do our best by them. We may go about that in different ways, but that doesn’t necessarily make one better than the other.” – Amen to that.

  2. You aren’t just trying to do your best, Kim. You ARE doing your best for the Roc. Ans he is thriving because of it. No matter how ugly and nasty the divide can get, don’t lose sight of that important fact.

    I think you hit on why I backed away fom any significant advocay beyond for my own son. I spend enough time second guessing myself to have to put up with the voices of strangers telling me I’m a bad parent!

  3. That division terrified me at first. It really, really stressed me out. Now I just kind of keep it in my background. I don’t think that judging others for how they take care of their kid is the best way to go.

    Great post!

  4. Sometimes the division drives me to tears of frustration. I get why people are so divided, but I don’t GET it. If we put the kids first, maybe the rest will work itself out–trouble is even the simple idea of “putting the kids first” means different things to different people.

    No easy answers on this one, that’s for sure.

  5. yes the division you speak about is frustrating…really, arent we all just doing the best we know how? Maybe the way I know to be the best, isnt the way someone else knows to be their best….

  6. You are doing wonderful and I am happy you decided to blog about this. I agree that the divide is troubling. I try to stay as far away from that controversy as I can and respect the different thoughts that other parents may have from mine. It never hurts to keep an open mind. One thing is for sure the blogs that I read and the moms that I have gotten to know through them have provided me wiht such an immense amount of support. I hate to think what this would have been like without you guys 🙂

  7. Amen, sister. As you well know, I stand right beside you on this issue. Oh hell, I just stand right beside you.

    I’ve talked and written and shouted from the damn rooftops again and again about how much this community needs to find within itself the tolerance, understanding, and above all compassion that it seeks from the world at large.

    I constantly ask how we can expect the world to be compassionate to our kids when we can’t even manage to show basic respect to one another. Truthfully, I find it apalling.

  8. “We are trying to do our best by them. We may go about that in different ways, but that doesn’t necessarily make one better than the other.”

    Well said.

  9. Pingback: Holding Pattern « The Roc Chronicles

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