Friday, April 5, 2013

My "Group"

First, a lot of things have been going on since I last posted. A LOT. And I will get to all those things next week, but first I have something else to say.

It's April. Autism Awareness Month.


Don't get me wrong, the more people "aware" of autism, the better. I would love for the vast majority of the populatuon to recognize an autistic kid when they see one, instead of pointing, staring, and making snide remarks. I mean, I don't really see that happeneing, yet, but I'll jump on the positivity train, and reamin hopeful.

It would be great if all this awareness actually granted families access to the therapy they desparately need, and if all the money raised went directly to them, but big business is big business. Each has their own agenda, and what people choose to support is up to them. I'm personally over all the in-fighting, and finger pointing, and name calling. That's just not the type of community I want my children to grow up in.

And, yes, I said children, because as of yesterday B is officially part of the club. He was diagnosed with Aspergers, which was no big surprise, it just means I have to work twice as hard making sure neither kid is screwed over.

What I am getting to is the dark side of Autism Awareness Month. Suddenly, tons of blog posts go up telling you what to think, feel, and believe. What group to support. What language to use. What you are doing wrong. How somone else is doing it all so much better. People decide they know it all, and aren't afraid to come out and say it. They pat themselves on the back for being so smart, and having all the answers, and they go out looking to garner praise from others (which they get, because, let's face it, the world is mostly made of sheeple). Those who refuse to fall in line are the bad guys, and the us vs them part of the Autism community is highlighted even more.

Then there are those who seek the celebrity of it all. Who want to do the most giveaways, have the most shared posts, gain the most followers. Because, really, what's the point of even opening your computer if you aren't going to have thousands of people falling at your feet, hanging on your every word, and thinking you are the king or queen of autism. Photos of cute kids are used as bait. Stories become more harrowing, or falsly uplifting. The voices of adults become louder, and sometimes meaner and angrier. All because what matters is how many people know your name. Obviously.

Having an autism themed blog has become a business unto itself, which is why I have all but quit blogging. That's not me. I do not have all the answers, I refuse to tell people which organizations are right or wrong, and I also know lots of people don't agree with some (all) of what I say. I am not willing to change that just to boost readership.

At the end of the day, I am not autistic. My kids are. They are my group, and the only group I need to listen to. How they choose to be represented, what part they want autism to play in their lives, that is all up to them. What they want to be called, autistic, or having autism, that's up to them. Not me. Not those who have already decided that one way or the other is better. My kids will decide what organizations they want to support. They will decide what all of it means to them. Only them. Because as unique as each individual is on the spectrum, so are their opinions on how they want to live, and be percieved.

The irony of it all is there are those who say no organization can speak for them, yet they think they can speak for every individual affected by autism. No one speaks for my kids. No me. Not another parent. Not another autistic person. Thier lives and identities belong to them, and only them. Period.

So, you will not find any blog posts from me this month, giving you a list of what to think, or where to send your donations. I won't tell you what you're doing wrong, or that everything I do is right (because I screw up on a daily basis). I won't be cramming my opinions down anyone's throat. I won't add to the us vs them debate.

I'll just continue to share our expriences and our lives with you, tell our truth, and work on getting through each day. Who has time for much else?


  1. Oh snap! I shared similar sentiments in my post (which no way will I self-promote here).

    Getting through each day is my favorite thing to do...because, each night, when the kids are sleeping and everything's still relatively intact, I feel like a SUPERSTAR!

    Hope the new diagnosis helps bring the family some resources and support. xoxo

  2. Well done! You said something in a way better and more eloquent way than I did the other day on my wall. People have to choose what is right for them, what works for their family and stop acting like they have a monopoly on the truth. Excellent post! Thanks.

  3. Excellent post! I agree with you all the way. It has gotten so showyand we have forgotten about the children.

  4. Excellent post! I agree with you all the way. It has gotten so showyand we have forgotten about the children.