“Your child has autism… I’m sorry.”

There’s a lot of buzz in the autism community right now regarding a recent statement from Autism Speaks co-founder Suzanne Wright and the subsequent resignation of author and Aspie John Elder Robison from his position with the organization.

At issue is the treatment of people with autism. Wright and Autism Speaks frequently talk about how autism destroys families, how it sucks the money, energy, and life out of every family affected by autism, and how it has to be stopped.

There is NO DOUBT that families raising any kind of special needs child are seriously stressed and need all the support they get. The problem is, the way Autism Speaks presents it, the child is evil, destroying its family, and ALL children with autism are severely disabled. Understandably, high functioning folks with autism are a bit offended by this.

Autism Speaks is continuing to promote the myths and stereotypes that make it even more difficult to raise a child with autism, and what we really need is tolerance and understanding (and, yes, more money, better support programs, and research to help treat those with particularly challenging symptoms).

My journey with autism started thirteen years ago, and the script could have been written by Autism Speaks… my son was struggling in school. A team of specialists evaluated him, and we had our meeting. I was on board; I loved my son and wanted to find out what I could do to help him.

They described their findings and said, “We believe he has autism. You should look into something called Asperger Syndrome.”

And then one of the specialists placed a sympathetic hand on my shoulder and, in a sad voice, said, “I’m sorry.”

Wait. What? Asperger Syndrome – never heard of it, but I can look into it – but why is this behavior specialist expressing sympathy to me as if someone in my family had just died???

I loved my son. I knew he had potential. And I was not about to write him off. But everyone in that room treated me as if a huge tragedy had just occurred. Autism. Evil. But I knew my son. I recognized his diagnosis for what it was – a tool!

Yes, a home with an autistic child contains a lot of stress – but a lot of the stress comes from financial challenges, scheduling challenges, support challenges, and lack-of-tolerance challenges. Huh. Those are all caused by other things – other people, lack of resources, lack of understanding. Autism wasn’t evil – and my child certainly wasn’t to blame!

Bottom line is that autism is a challenging condition, but children with autism can be taught, and a significant number of the children being diagnosed today are not severely affected. It may seem like the end of the world when your six-year-old is failing first grade…

… but thirteen years later, that child is now a sophomore in college, living on campus in another state,  and he made the dean’s list. I couldn’t be more proud!

 

(I wrote my mystery novel, Asperger Sunset, as an exercise in explaining, in story form, what it is like living on the high end of the spectrum… it’s available in paperback and Kindle, from Amazon.com – and if I were independently wealthy, I’d send a copy to everyone involved with Autism Speaks!)

Advertisements

Good luck to my NaNoWriMo friends – here are 6 ideas to help out!

Today (November 1st) kicks off the annual National Novel Writing Month (NaNoWriMo)! My friends are collecting their notes, changing their Facebook profile pictures and getting ready to commit 50,000 words to a story in the next thirty days.

I love the idea of people focusing on a creative pursuit like this. It gives you a chance to examine your own beliefs and ideas about life through storytelling, and it challenges you to have fun. Because if you can’t have fun you’ll never come up with 50,000 words.

Here are some ideas you might find useful:

  1. Create a character you like. It amazes me how many books are published featuring unlikable protagonists. It’s hard enough to read 300 pages about an unlikeable character – I can’t imagine what it’s like to spend so much time creating, editing, and working with that unlikeable character! Yes, your character should have flaws, but I want to root for them to succeed in whatever it is they want to do.
  2. Take your likeable character and make him/her miserable! You ever have one of those days where everything goes wrong? That happens to your character today and every day. Two steps forward, one step back (we are still rooting for him/her to succeed, so some forward progress is nice, but not a lot).
  3. Set your story someplace where you’ve been, or where you can imagine being. Tell me about it in vivid detail, because I probably haven’t been there! If I have been there, tell me about it so I can feel special when I think, “I know where that is!” In mystery novels, the advice is to make your setting so strong it’s almost a character. I think that can be applied to any genre.
  4. Give every character a secret. Reveal them, one by one. This gives depth to your characters and adds texture to your story when you’re not in the main flow of your plot.
  5. Keep your reader asking questions – but answer some of them as you go. A novel is like a scavenger hunt. There’s a primary goal, but a lot of little components are needed to complete it. Reward your reader with small answers from time to time as you work your way toward the big finish.
  6. Be brave! Let your characters sit in your head and play. Your brain works best when it is starting to get bored. If the characters are already primed and in your imagination then you will get ideas in the shower. On your daily commute. While doing laundry. Be ready for them and write them down!

NaNoWriMo is a great challenge and a lot of fun. My mystery novel, Asperger Sunset, started out as a NaNoWriMo. Well, several of the characters did. And I went through six years of editing and rewriting afterward. But the book never would have happened if I didn’t sit down to write a novel in the first place!

Best of luck to everyone and I hope to see the results from some of you in about thirty days!

Aspies aren’t nice to have around???

While browsing through recent blogs on Asperger’s, I came across a review of the novel, The Rosie Project, about a man on the autistic spectrum who creates a list of criteria for a spouse and sets out to find that woman. The reviewer felt the social aspects of the novel rang false, and said, “Asperger’s is a disorder. . . An inability to connect emotionally with others means that Asperger’s sufferers . . . are not nice to have around.”

Moment of stunned silence. WHAT?!? I raced down to the comments, ready to defend the Asperger’s community against such a cold-hearted statement. Not nice to have around? How mean can you get? The comments had been closed. No chance to respond.

My world is filled with people who have Asperger’s and this statement seemed so heartless and so cruel and, as I thought about it further, so true, in many sad ways.

Fiction wants happy endings. I’m a huge fan of “The Big Bang Theory,” and of Amy, in particular. Though everyone talks about Sheldon being a classic Aspie, Amy is a classic female Aspie, with some of the significant – and occasionally tragic – differences that occur in women.

Amy is very aware of social norms, yet rarely experiences them. She’s with Sheldon because she genuinely likes him, but also desperately wishes he was more “normal” at times. She has misunderstood her level of friendship with Penny on numerous occasions, most notably in the episode where she commissioned that huge, awful portrait of the two of them.

The episode that stands out to me, though, was the one where Penny and Bernadette went shopping for bridesmaid dresses – without Amy. She found out, and was crushed. This is where the “(Aspies) are not nice to have around” comment comes in. Amy wasn’t welcome. She was deliberately left out. In the show, Penny and Bernadette apologize and draw Amy back into the group, but in the real world, in a world not controlled by comedy writers and actor’s contracts, that wouldn’t happen.

More likely Amy would have discovered the rejection, sadly accepted it, and left the group entirely.

So, my heartless blogger was correct, in a grain-of-truth sort of way. People with Asperger’s experience a great deal of rejection due to their quirks, because other people don’t want them around. I counted the birthday invitations that didn’t come through, the dates that never happened – and how many Aspies ever attend their high school prom? These are direct rejections by peers, and they hurt.

However, Aspies CAN have successful friendships! They can get married. I know of one couple closing in on 50 years, and another going 24 years. They can have long-term friendships. In fact, to have an Aspie friend is to have a loyal, die-hard friend who will do almost anything for you – as long as you are clear on what you need. Aspies do not see friendship as disposable, because friends are precious and rare.

If people can get past the “not nice to be around” concept, past the quirks and oddities that pop up, especially as young Aspies are learning to navigate the world of friendship, people can find companions who will stick with them through the most difficult of times, who offer genuine friendships. So maybe the idea of a happy ending isn’t so far-fetched after all.