Wednesday, February 4, 2009

My Two Faces of Autism

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.


  1. This was a great post. I don't personally know what you speak of, but the honesty here was wonderful, and I understand just a little bit more of it than I did before.

  2. Yes. It is true. Lately all we talk about is those high functioning kids. The ones we can say.. "See it's a miracle!" "I did XYZ and now he's -talking,walking,laughing,whatever...." It's sad. Sad for the child but also sad for the parents. No one knows what the parents have to go through. It's a tragedy. Your life is ripped out from under you.
    I have a child on the spectrum. Not sure where he's at now but certainly highly functional. We have started Homeopathy and it's helped with the tantrums and the aggression and the craziness. It's calmed him down some. I'm not saying it's going to cure him-I'm saying it's helped him calm down. So we can get a breather.

  3. I watched just a snippet of Jenny McCarthy on Oprah this morning, and she was feeling so good about herself that she "cured" her son Evan. In a very sing-song voice (almost chiding) she said that as a parent you can either say, "oh woe is me," and in an angry voice, she said you could go after it with determination.
    Why do you have to choose to either feel bad about it OR go after a solution? Why can't you do both? I know that I for one have felt sorry for myself, for my child, for our situation. I've felt angry about the hand that's been dealt -- but that doesn't mean that I don't do every single little thing I can to help my son.
    Like Holly said, for me it is okay to feel like it's the end of the world sometimes. At least I'm facing the issues and honest with myself and my situation.

  4. Yes, yes!! Thanks for your honesty.

  5. great post. i love the last paragraph, and i think it applies to anything in life, TO not pretend that everything is perfect.

  6. This is a wonderful post. I am a parent of an autistic child. He is high functioning and I believe that he will grow up to be an independent, smart person, albeit with some quirks. I think it is very important to put out information on the positive aspects of autism. But I can only speak for myself and my situation. I think every parent has every right to feel the way they do about their child's autism. You're right, there are negatives to autism, and my child struggles because of it. And some kids and adults have it much harder. Just as I think it's important to put positive truth out there, it is important to put harder truths out there too. Just as there are no two autistic people alike, there are no two identical ways to feel about it. And that's okay. Thank you for writing this.

  7. Thank you for writing this. My son is also on the spectrum, though his diagnosis is pdd-nos and aside from his quirkiness and some developmental delays, he's pretty high functioning. I am, however, very aware of how different our lives might have been--the difference between being able to turn my back on him while he plays (or uses the bathroom) and not.
    Autism has many faces. It is not one thing or one set of symptoms. And yes, I believe it is imperative that we tell our stories--all of our stories, the good and the bad and all the in-between. Because it is the stories that will sustain us. Our stories are our lifeline to each other and the world at large. We can't settle for autism to be painted only one color, or to simply be portrayed as a black and white diagnosis. There are so many shades of grey. And that's what people need to know and understand, so that when times are hard, and we stumble, there will be someone or something standing by to break our fall.