What Autism Parents Have Patched Together, Let No Media Man Put Asunder

I am angry.

I’m not talking about mild aggravation here. I am scream-in-frustration spit-in-someone’s-eye angry. I would like to take the object of my anger, lock him into a room with me, and give him a stern what-the-bleep-are-you-thinking talking to.

Deep breath… soothing thoughts…

Allow me to explain.

As an autism parent, I spend the better part of my life fighting for stuff. Six years ago, I fought for the assessment that led to George’s diagnosis. Then I fought for services. Every year I fight for funding to pay for respite workers. I fight for educational accommodations and opportunities for my son.

I fight for awareness.

Most of all, because I want my son to have the opportunity to live a happy, healthy, productive life, I fight for acceptance. I try to encourage people to look past the more challenging aspects of autism to see my child for who he is: a beautiful human being, full of love and bursting with potential.

From time to time I see baby steps of progress. Someone might leave a comment on my blog saying that they have a greater understanding because of my writing. Or I might see comprehension dawn in someone’s eyes when I offer an explanation for a grocery store meltdown. Those moments of progress are so gratifying, because they give me hope for my son’s future.

And then, along comes MSNBC host Joe Scarborough, stating that the man responsible for the Colorado movie theatre shooting was “probably on the autism scale.”

Thanks, Joe. Way to promote acceptance for people with autism. Telling the world that a kid with autism could potentially grow up to be a mass murderer really helps our cause.

What astounds me is that Joe Scarborough is the father of a child with Aspergers. Having parented a child on the spectrum, hasn’t he had to have the same fights as other autism parents? Has he not had to beg for funding, or services, or the rewording of a point in an IEP? Has he not dealt with the stares of unsympathetic strangers or the ostracism of his child?

Has he not worried about whether his son will be accepted by the society in which he has to live?

Joe Scarborough’s statement about the Aurora shooter is not based on anything but dangerous speculation. It is my hope that most people will have the sense to dismiss what he said as groundless nonsense. It is my fear that he has planted new seeds of baseless stereotyping that will serve to further isolate the kids we are trying so hard to integrate.

People really need to think before they speak. Especially people with any kind of public voice.

(Photo credit: Fifth World Art. This picture has a creative commons attribution license.)


Sticks And Stones And Words That Hurt

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Special needs parents come with all kinds of super-powers, one of them being the ability to grow a thick skin. This is a necessary part of survival: without it, we would not be able to withstand the stares from strangers during public meltdowns, the judgmental comments that are designed to make us feel like bad parents, and the mothers who steer their children away from our kids in the park, as if autism were contagious.

These things never really stop hurting. They never fail to make our hearts ache for our beautiful children who through no fault of their own, are targets of ostracism and discrimination. As we grow into our roles as special needs parents, though, we learn coping skills. We come up with ways to shield our children from the hurt, and to let the strangers know that our kids have a place in this world, differences and all.

We learn how to accept that the blatant looks and rude comments are not a reflection on us as parents. They are a reflection of the ignorance and prejudice in other people.


No matter where we are in our special needs parenting journey, nothing can prepare us for the first time someone maliciously refers to our children as “retarded”.

Although this word was originally used in a medical sense, it is now generally regarded as a derogatory term, especially when the intent is clearly to hurt either the child or the parents. As conventional wisdom states, “It’s not what you say, it’s how you say it.”

Today marks the fifth anniversary of my son George’s autism diagnosis. I guess it is a cause for celebration: not only have we survived for this long, we have seen great strides along the way.

It is also the first – and hopefully only – day on which someone referred to George as our “retarded son”. It happened in the early hours of the morning during a telephone argument between my husband and someone else. There is no doubt that the words were spoken with malicious intent.

George was asleep, so he was spared the pain of hearing himself referred to in this way. The hurt behind the words had to go somewhere, though, and it slammed into me, almost leaving me breathless, and then settled over my shoulders like a heavy cloak.

Several hours later, I am left with a knot in the pit of my stomach that won’t go away, and unshed tears that I am trying with all my might to contain.

As I try to prepare my son for life in the big wide world, I worry about what the big wide world is going to throw at him. Will it be a place of opportunity for him, or will it be a minefield of insults and discrimination?

Do I try to shield him from the hurt, or do I let some of it get through to him so he can learn how to protect himself?

How do I ensure that my son will be OK, that he will be happy and feel safe, in the days when I am no longer here?


Colouring 9/11?

When I was a child, I liked colouring books as much as the next kid. Or at least, I liked them as much as the next kid who was as artistically challenged as I was. I was never one to stay inside the lines, and have a vague memory of my Kindergarten teacher yelling at me for “scribbling instead of colouring” a picture of a kite.

The pictures featured in my childhood colouring books were pretty much what you would expect. Mickey Mouse. Donald Duck. Puppies chasing giant beach balls. Little kids riding tricycles. There was certainly never anything violent, because who would expose a six-year-old to violence through such an innocent medium? I think the only picture that suggested physical harm was of Bugs Bunny falling off a cliff. But even then, everyone knew that Bugs Bunny wouldn’t actually die, or even be hurt. He would merely create a bunny-shaped hole in the ground, from which he would emerge unharmed and carry on with whatever he had been doing.

I was never given a colouring book that depicted, say, scenes from World War II or the arrest of Nelson Mandela. I never coloured in pictures of tragedy or violence. The same goes for my kids. Their colouring books show scenes from The Backyardigans or Dora The Explorer. Nothing about war, death or disaster. Even if I saw that kind of material on the shelves, I would not get it. I already have enough trouble with the influences of TV and the Internet.

It would seem, though, that not all parents think the same way I do. According to today’s issue of The Metro, ten thousand copies of a 9/11 colouring book have been sold. Across the United States, ten thousand kids are colouring in pictures of the burning towers and the shooting of Osama bin Laden. The publishers of the book, which is at least partially aimed at a demographic that wasn’t even alive at the time of the attacks, defend the book, saying that it simply tells the story of the planning, execution and aftermath of the attacks.

I am all for freedom of information, and I have already learned, after just eight years of parenting, that it is futile to try and shelter kids from the darker side of life.

I have to say, though, that this book concerns me. When the time comes for me to educate my child about 9/11, I do not believe a colouring book will be the means to do it.  Particularly not a book that includes statements designed to encourage our kids to discriminate against others.

“These attacks will change the way America deals with and views Islamic and Muslim people around the world.”

I cannot possibly support a book that sends the message that it is OK to treat any group of people differently based on their race and religion. Yes, I get that the people responsible for 9/11 were bad and evil. I have no argument with that. But a statement like that suggests that our kids should treat the little Muslim kid in their class differently to the way they treat everyone else.

Parents, would you buy this colouring book for your kids? Do you believe it is a valid educational tool, or is it just another avenue for the promotion of stereotypes?

(Photo credit: This picture has a creative commons attribution license.)