Friday, March 30, 2012

Autism is PART of who they are, not ALL of what they are.

Yesterday the new CDC numbers for autism came out.  We know what they are.  I won't repeat it.  I posted on Grape Jelly on Pizza

I am sitting here in disbelief. Sad. So freaking sad and very mad at the new rates for autism. 1 in 88 US kids have autism. How can this be? WHAT IS GOING ON?? What the freak is going on here???

After many responses from readers, I was sent this one. 

Grape Jelly on Pizza, I'm very saddened at your perspective of these rates. I don't think diversity is such a bad thing. We WILL have to deal with autism, and as the rates go up, it will be LESS about us and MORE about them. It seems like you see autism as something that limits their opportunity as a person. It doesn't. I think they see more, and they feel more. Do you think they want anything different than the same love, respect, and care that we do? I hope that one day their ways will change our ways. It also doesn't matter what causes autism, it's the fact that it's here to stay that is important. So many autistics say that they want to stay autistic no matter what. Is there ever going to be a time that a person can be autistic and be proud, and happy about it? And can't we see something better behind an autistic than just a set of problematic behaviors? I would be autistic if I could choose to. We have to admit that we know nothing about autism. Do you think that it is simply some sort of bad mistake that the rates are jumping? Every person has a purpose, and so does every autistic. They don't HAVE autism, they ARE autism. And we need to accept that. We need to start listening to them up-front instead of talking behind their backs speculating things that don't bring us any further to knowing more about them. They are more than us. And better. Think about how they might feel, and not just you.
-Long-time sibling of two autistics

I went to a friend, Homestyle Mama (with a side of Autism) to double check if she thought my feelings were valid and she did. 

Then when I woke up this morning a lovely comment was written in response to the previous statement.  I'd like to share it with you because it fits how I feel.

I find these numbers sad too. I find it more sad that others are saddened by "perspective" of others. What I see here, is a mother who spends every minute of every day striving to help her son. I see endless battles with schools and therapies trying to find help for her son. ...I see a mother that turns her living room into an angry birds playroom for her son. A mother who fills her car with stuffed animals and stickers..for her son. A mother who spends endless hours fundraising for the Autism research. I see a mother who has little, if NO time for herself. I dont see a mother who thinks autism is more about herself...I see a mother who does whatever it takes to make a better life for her son.. which includes altering everything about her own life to better fit and understand his world. I see parents trying every single thing they can, to step into the world of their autistic child, to try and understand and communicate. I too have someone close to me, on the spectrum, but not severe. Do I wish this person felt proud and happy of who he is? I wish it every day. Instead, I see a child that has been picked on and bullied by other kids at school for years. I see a child that has been told he has "no heart" because he sometimes didn't know to laugh at jokes other kids told. I have seen this child come home hysterical after a bus ride home day after day, because kids called him "ugly" and a "freak" I have watched this boy watching other the other boys, wishing he were like them, wishing he knew how to fit in and understand their world and wishing they understood him. He isnt just like them. He is smarter, and he is amazing. But what I think doesn't matter, what HE thinks and feels does matter.That is what is sad here. He feels different and he is treated different. I don't see any parents here that don't accept the fact that their child has autism. I see parents who refuse to give up at trying to break the barriers so that they can understand the way their child sees the world. The people that aren't "listening" are the ones that have resolved themselves to the fact that these children "are autism". Autism is NOT "what they are" its a term or label for something we do not fully understand. It is PART of who they are, but its not all that they are. I am most saddened that we live in a world that has little help available for these children and their parents.

Thank you Stephanie for writing this.  Autism is PART of who they are, not ALL of what they are.  Love that. 


  1. I am new to this world, and have arrived rather reluctantly. I am the first to admit that when the doctors initially assured us that our kids were not autistic, I was so thankful. Finding out down the road that those routine screenings only skimmed the surface, and had missed everything that was a bit deeper, was heartbreaking. I feel exactly as you do, and could never have expressed it as well as Stephanie did. It is one thing to accept that your child is autistic and do everything in your power to support them. It is something completely different to wish it upon them. Thank you for your refreshing honesty.