“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!)

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.

Asperger’s and the Social Benefits of Creativity – But Where are the Aspie Writers?

Asperger’s Syndrome and creativity – the two are certainly not mutually exclusive. People with autism see the world differently and should be encouraged to develop their creative interests.

Everyone has a natural desire to express themselves, and creativity provides a golden opportunity for socialization. I’ve always been uncomfortable at large family gatherings and I have a driving desire to document things. Throw a camera into the mix and a few basic scrapbooking supplies and something happens…

I started scrapbooking before scrapbooking was “cool.” I’m not fancy. I do fairly simple layouts on various colors of paper with a few sticker embellishments and lots of descriptive captions, especially names and dates. I put together a photo album each year and I always bring one or two of them along to family gatherings. People love to look at the books, we talk about the people in the pictures and my comfort level in a crazy, overstimulating environment improves immensely.

Kids with autism who paint or draw or play music can be encouraged to share their talents, and they often do. This creates healthy social interaction and builds confidence. But where are the writers?

Many people with Asperger’s write non-fiction, and that makes sense. Who better to describe what it’s like to have Asperger’s than someone with the condition? But finding fiction written by people with Asperger’s is extremely difficult, and I’m not entirely sure why.

People with Asperger’s have a keen sense of detail – something valuable for a novelist. Aspies are known for having sharp memory skills, handy for creating and maintaining a storyline. Since Aspies need to actively learn social behaviors, they have a strong understanding of what’s needed to motivate and develop characters. Aspies are all about rules, so reading a few books about the writing craft sets up a terrific structure to build upon.

There may be Aspie authors out there, just not writing about Aspie characters. I wonder about Jeff Lindsay, the author of the Dexter novels. While Dexter is a psychopath, his observations and confusion about human behavior are delightfully Aspie-like, and I’d like to think that’s an extension of the author’s world-view.

Jodi Picoult wrote a novel, House Rules, about a teenager with Asperger’s, but honestly, I never felt she got very far inside his head. She did a lot of hard work and research, but that neurotypical essence still crept through.

One of the reasons I wrote Asperger Sunset, my mystery novel, is because I couldn’t find anything else like it out there. But I’m looking for more. If you know of any books featuring characters with Asperger’s or works of fiction written by authors with Asperger’s, please share them with me. Did the writers do well? Why or why not? Celebrate creativity!