Yesterday a study was released by the CDC
, using data from 2010, and announcing that 1 in 68 children are now autistic (that breaks down into 1 in 42 boys and 1 in 189 girls). And as I read the various posts about autism in my news feed and scrolled through the latest in autism news I thought I'd dedicate today's Quick Takes to the topic. So here are my rather random 7 Quick Takes: Autism Edition.
Disclaimer: There is no one particular experience of autism. Most of what is here is just mine! Others may find they relate to a lot of what I've written or they may find that it has nothing in common with their experience at all!
Probably like many parents of kids with autism, when Maggie was diagnosed I suddenly felt like I saw articles about the topic everywhere. And actually this isn't really that far from being true. I probably see at least one article about autism on a daily basis. I can usually tell from the title whether or not I should read it. On very, very rare occasions I'll actually pass on the article to Paul or my parents, or share it on the blog facebook page.
Those are the ones that I actually think are worth reading.
Most of them... not so much. But I don't mind seeing them. Starting a discussion about autism is, in my mind, a good thing... although whether or not it stays a good thing really depends on where the conversation goes.
When I first began learning about Autism, I came across the Autism Speaks website and instantly recoiled. The website made me feel queasy. Seeing the billboards they've splashed all over our city and reading their name on each one even makes me draw back a little, because it instantly makes me think of what they promote and they promote a mindset that depicts a nightmare that destroys everything that it touches.
That's not what autism is to me at all.
Autism, in my life, is the little girl whose sleeping in the next room, whose face lights up when she sees me. It's the laughter with which she fills our house. It's her sparkling eyes that convey so much, even on days when she doesn't have that many words to share with us. It's her sweet singing voice that we've been blessed to hear.
You see, I can't separate autism from my daughter. It's an innate part of her personality and it's part of why she's so wonderful and unique and beautifully herself. And that's why organizations that use language that paint autism as some horrible, horrible nightmare don't speak for me. Because while we certainly have challenges and have shed our share of tears, there's plenty of lightness and hope and happiness there as well. And saying that a diagnosis means your world is going to end and your marriage is going to be destroyed, just isn't accurate.
It may (or totally may not) surprise you to learn that I'm not all that interested in discovering a cause for autism. I'm also not all that bothered when people say this or that or the other thing that I'm fairly certain has no effect on Mae at all, caused their child to have autism. I can understand where the ideas and claims come from, whether or not they have any basis in science or even reality.
If there's one thing I've learned over these past months it's that Maggie has incredible reactions to absolutely normal things. A bite of a Twizzler (did you know they have wheat in them?) might cause her to be in excruciating pain and almost completely lose the ability to speak for two weeks. It can turn our world upside down in a single nibble.
That doesn't mean that I think that Twizzlers cause autism. Maggie's sensitivity to gluten and dairy, however, seriously affect her ability to communicate and function, likely because they cause her such extreme pain (and let's face it, none of us function all that well when he feel like rolling up in a ball and clutching our stomachs).
I guess I'm probably not all that interested in reading articles about what causes autism because I do tend to believe that in our case it's genetic. One article I did find interesting came out this week suggesting that autism begins in the second trimester or earlier
. I wouldn't be surprised if that was the case.
I'm also not at all interested in finding a cure because I'm not about to suggest curing my daughter from who she is.
Do I want to help her be the person she's meant to be and grow and share her amazing personality with the world around her if and when she feels like it? Absolutely. But I won't do that by destroying who she is. My goal isn't for her to be just like everyone else. In fact, that's not my goal for any of my children. It's for her to be the person that she was created to be and live up to her potential.
If your child is diagnosed with autism you'll start seeing some really, really weird explanations for why he or she is the way that they are. Remembering that everyone is just trying to help is important whenever you receive this type of information. A sense of humor helps too.
Did you know that some people think that people with these particular characteristics are aliens? (No. Not kidding
. Not even a little bit.).
Some of the suggestions will be less weird. Some won't.
You'll likely get a lot of advice. Some of it will be good. Some of it will be absurd. Laughter and a sense of humor helps.
A few days ago I was laying on Mae's bed, watching her and Sadie and Patrick jump on Sadie's bed. At first I kept telling them to be careful of their brother because it looked like they were going to smash into him every second.
But I really shouldn't have worried.
Maggie often appears to be totally absorbed in her own world. She did at that moment. I mean, she was laughing with her brother and sister, but she wasn't really looking at either of them. She was just my little sensory seeking girl, enjoying jumping.
I never even saw we glance in Patrick's direction, which is definitely below her line of sight. But after watching her for about five minutes I realized that she was acutely aware of his every move. Patrick jumped and blundered around the bed with his poor toddler balance, giggling, and she carefully made sure she didn't bump into him. Twice when he almost smashed into her she stopped and threw her arms around him and hugged him and then went back to jumping.
It's easy to underestimate how much attention she's paying when she doesn't seem to be engaged, but more and more I realize that she takes in everything. Even when she's staring off in the opposite direction.
Sometimes the weirdest thing for me about the last few months has nothing to do with Maggie and her actual autism and everything to do with the number of doctor's calling my house these days. The example below is not an uncommon conversation:
Receptionist: "Hi. May I speak to Cammie ?"
Me: "This is she."
Receptionist: "Hi Mrs. W. I'm calling from Dr. S's office."
Me: "Hi?" (sounding confused because I have no idea who that doctor is)
Receptionist: "Your daughter was referred by Dr. C and we've already pre-approved your insurance for your appointment with us. I can schedule you for two weeks from today. Does that work? I'll send out a packet in the mail with the information you need to bring..."
Sometimes I know who the referring doctor is. Sometimes I have no idea who referred us even though it's probably a doctor that I know, because right now, between my three children and the pregnancy, there are so many doctors that my brain is completely full of names and there just isn't any more room.
In an hour I'll be leaving the meet with a neuro-psychologist. I only know he's a neuro-psychologist because I remembered his name after I got off the phone with his receptionist and I googled him. Paul's coming with me because he has an overwhelming number of reviews online letting everyone know that he gets 1 star for bedside manner and isn't the most pleasant person to be in the room with, and Paul is way better at dealing with doctors like that than I am.
But yeah, tons of doctors and therapist and social workers calling each week whose names and offices I don't even recognize? For me that's probably been the weirdest part of these last few months. Which is to say that life with autism isn't all that weird. It's just life like it was all along, with a lot more help thrown in to help Mae meet the challenges that she faces each day.