There are a lot of bloggers and parents of autistic children who look to celebrate their autistic children -- everyday, and want to open up to the world to show how wonderful their kids are, and to choose to look at the gifts that they offer instead of the disorder that they're burdened with. These parents want to offer their voice to speak in support of autism -- the fight for its existence, acceptance and its sustainability.
I understand this attitude and this activism. And, personally, I do embrace autism and all of its pretty colors -- to a point. I embrace Nick and his disorder and want the world to know just how special he is because I believe he is special and great -- just like you believe that your child is great. So, I'm here to say that I'm standing right there beside you -- like-minded parents who want to promote autism as a positive and stop judging it as a negative for the sake of our high functioning autistic kids and their place in the world.
So, I can say that I get it, I do. They are our little gifts in life more precious than most and who hold a very warm spot in our heart and the hearts of others who have the privilege and open-mindedness to know and embrace them.
However, I also represent, respect, and understand the other side of autism that we call hell -- for those of you who understand what hell is, because not all of you do. Whether you like to hear it or not, there is this side to the disorder and it's often hidden from the world. It's a sadder, scarier, exhausting and, frankly, horrific side to this disorder that you know as severe or low functioning. It's a perplexity that I'm still trying to wrap my brain around and understand, even after 13 years. It's autism at its worst and I'm not choosing to celebrate it. Not a chance. It's a side that few people actually get to know, understand, or accept because they give up before they can even try and have to institutionalize their child at the tender age of 5. It's autism at is worst -- an evil, hell, devastating, and heartbreaking. And don't tell me to stop and look on the bright side or be positive, because there is no brighter side to this side of autism -- trust me, I've spent time looking, begging and pleading that there would be a brighter side -- at some point, someday; because how can a parent allow herself to feel this way?
A severely autistic child, like Meghan, is not a child like Nick with higher functioning autism and one you can mainstream into classrooms, and show off in public places without worry or incident. She is not a child that you can trust to play in the yard without running off, to trust with a toy without breaking it, or to trust to use the bathroom without playing with her feces -- even at 13. She is not a child who you can talk to and have a conversation with or to get to know her precious little thoughts and secrets. After 13 years I still don't know what Meghan's favorite color is because she doesn't understand the question. Children like Meghan cannot connect, speak or relate easily to you or to me -- her mother -- or to even speak those precious few words that we all wish to hear: "I love you Mommy," or even "Mommy" would suffice; I'm still waiting, I'm still waiting to hear her voice. It's autism at its worst and I know it just as well as I know autism at its best.
Harsh? Maybe, but it's true. But I also want to say that it's okay, too. It's okay to feel this way. It's okay not to pretend that everything is okay when it's not. To allow yourself those fleeting moments to feel hostility instead of happiness; to feel dread instead of hope; to want to condemn autism instead of celebrating it, because it's real, and it's raw and it's hard. And it's hidden from the world because, frankly, people want to see the hopeful side of autism -- the prettier side -- the acceptable side -- the side that we want to show off, celebrate and promote with all our hearts because it makes us feel better.
By Holly Nappi Collins, who blogs at Fearless Females. This post is reprinted at Hopeful Parents with her permission.