Been There, Done That, Got the T-Shirt – and Someone Finally Noticed!

I just finished reading Steve Silberman’s hefty hardcover, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. I started the autism journey over 15 years ago and a lot of the stories parallel my own.

When I first encountered the word autism, it was as if I had been handed a death sentence. The room got quiet, the social worker placed his hand on my shoulder and said “I’m sorry.” I was confused. I had seen the movie Rain Man and my kid wasn’t like that. What the hell?

One administrator, in a throw-away line that became a lifeline, said “Look into something called Asperger’s Syndrome.”

And we were off. Symptoms fit, therapy was set up to teach social skills and executive skills and now I have a senior in college. We’ve come a long way, baby!

NeuroTribes is a look at the history of autism. From Hans Asperger’s initial studies in pre-World War II Vienna, to Leo Kanner’s work in America, all the way up to groups and organizations hard at work today. Silberman isn’t kind to Kanner, suggesting he wrote a lot to advance his own career and he refused to acknowledge the lesser affected children until many years later. Asperger, on the other hand, may have painted too positive a picture when describing his charges, as the Nazis were seeking to eliminate imperfect people. In time, gas chambers were actually installed in hospitals and over 200,000 mentally afflicted people – many of them children – were murdered.

Throughout the book, stories of parents who refused to institutionalize their children echo over and over. It’s these parents who refused to believe the professionals who pushed forward to get education rights and therapy programs that fit and helped their children. Finally, in the mid-2000s, people with autism themselves got involved, fighting back when NYU’s Child Study Center posted billboards to recruit new study subjects: “We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives. This is only the beginning. Signed: Autism.” The billboards were soon removed. Autistics had found their voice. And it was strong.

I was caught up in this sea of confusion. My son was never as difficult as other kids I had read about. Yes, he was prone to tantrums and craved routine and was deeply absorbed in clipping out the MasterCard and Visa logos from the phone book and taping them in a long line on the wall throughout our house when he was three years old. We knew he was different and had challenges but finding help was difficult. Six different diagnoses from six different professionals. Then we, too, like so many parents described in this book, found the Autism/Asperger’s trail. We got away from the stereotypes and found the real people underneath.

We’re still fighting stereotypes. Though Rain Man was wonderful at the time in that it introduced the word “autism” to the general public, it was hard for us because we weren’t dealing with issues that severe. We said “autism” and people refused to believe us. We heard all the hurtful comments, from “I’m sorry,” to “kids with autism are better off dead.” I became estranged from some family members because they refused to support us when we were struggling and later marked off my son’s success to “maturity.” Being early in the autism “epidemic,” I had to introduce the concept of non-Rain Man challenges to each and every Special Ed teacher along the way.

We’re winning, though. The biggest discovery over the years is that kids with autism, no matter how severe, can LEARN. They improve. They grow. What they need most is love and understanding.

Silberman talks about this in his book. He explains that neurodiversity has always been around and it should be treasured and celebrated and accommodated as needed.

Finally. Someone understands.

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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!

Asperger’s and Honesty

Can people with Asperger’s lie? It would be nice to say no, but the truth is most people figure out that saying certain things get them into trouble, and once in a while everyone lies, usually to protect themselves.

It is true that people with Asperger’s lack some of the skills needed to tell a good lie – body language, either consciously or subconsciously, may give it away. Or the tone of voice, or an inability to create a plausible story. I do admit to using the “Aspies Don’t Lie” concept in Asperger Sunset as a plot device, but it is pretty idealistic.

People with Asperger’s do, however, have a strong desire to follow rules. Anxiety and emotion create a chaotic world and rules sort things out. Children with Asperger’s often play meticulous games with their toys, lining them up and grouping them, keeping everything in order. Following the rules is rewarded with a reduction in chaos.

This ties into lying. One of the rules is “Be Honest.” Honesty is a personal trait of mine that I follow with almost obsessive precision. Over the years I’ve learned honesty that can hurt someone’s feelings often should not be shared, and I can be silent about something, but if faced with a direct conflict, I cannot lie.

This past weekend I ran into an odd situation regarding honesty. My family had gone out to dinner. As the children are now teens, their appetites are adult-sized and restaurant bills have gotten higher, so dining out is a treat for us, not a regular occurrence. We went to a brew-pub style restaurant, enjoyed our time together, and then got the bill.

My spouse started tallying the tip. My eldest, who is very budget-conscious, glanced at it and said, “that’s a really good deal.” My husband agreed. Just forty dollars, he said.

Forty dollars? No. For four of us, each having a dinner plus drinks plus an appetizer in a state with seven percent sales tax, that didn’t make sense! I asked to see the receipt. I spotted the problem immediately. Our harried waitress had forgotten to add our drinks!

I felt an overwhelming need to correct the problem. The place was very busy. Our waitress, thinking she was done with us, had moved on. The hostess couldn’t help us, so she sent us to the bartender. He was surprised that we not only had noticed the error but wanted to correct it.

Was it the right thing to do? Most people pay little attention to numbers – they wouldn’t have noticed the error in the first place. Others would say, “oh, cool, free drinks,” and gone home. For some reason I had to correct the problem. I had to pay for those drinks. It was being honest. And “Be Honest” is a rule that must be followed.

What about the fallout? The waitress may have gotten in trouble for ringing up the bill wrong. Or she may have seen the total and gotten angry because she thought we stiffed her on her tip, since we only tipped on the original charge. Or do they think we were total idiots for paying for something we weren’t asked to pay for in the first place?

I know restaurants make a huge profit on drinks. I also know most small, family-owned businesses continue to struggle in this economy. I could have left things as they were, pretended I didn’t notice the mistake and moved on, but something in me could not let it go. Maybe I made a deposit with the Bank of Karma – will the universe reward me in the future? I was embarrassed to be doing something almost no one else would do, but I followed the rule. It lessened the chaos. I cannot lie.

My mystery novel, Asperger Sunset, features a pretty honest fellow caught up in a murder. It’s available in paperback or kindle or can be ordered through your favorite local bookstore!