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.


Small Talk and Complaining About the Weather

Yesterday, after my dental cleaning, the hygienist set up my next appointment, which would fall in August. She laughed and said, “By then, we’ll be complaining about the heat instead of the cold.”

I laughed with her, but I cringed a bit inside. Complaining about the weather seems to be reaching Olympic heights this year, with the Polar Vortex affecting so much of the nation, more and more schools closing due to extreme weather conditions, and peoples’ general obsession with griping about the current conditions.

As someone who has cultivated the skill of small talk over the years, I’ve always known weather is a part of it. Weather is something that everyone experiences so it is quick and easy common ground, readily available fodder for small talk. I’ve prided myself on coming up with small-talk-based discussion revolving around other things – when I fall back on the weather, I consider it a weakness in my own social skills.

Yet people seem obsessed with weather! It’s too hot, it’s too cold, there’s too much snow. Is it small talk, or do they really hate the weather outside? I don’t quite get it.

I love weather. It fascinates me. Living in Wisconsin, I get all the extremes. The newly named Polar Vortex, frankly, is normal for us. We expect high temperatures below zero for a period of time each winter. We expect an average of 55 inches of snow per year. In the summer, we are a bit cooler than other places, but we still have days that settle in the mid-90s and the humidity is intense.

When a storm is poised to hit, I turn into a weather geek – I’m watching for the severe weather bulletins, I move the pets and important papers and such to the basement if tornadoes are threatening. If it’s snow, I work ahead if I can, so I can take a day off and enjoy it with the kids if school gets canceled.  

You’d think I’d LOVE talking about the weather! But discussing what is actually happening isn’t on most people’s agendas. They just gripe about the cold and snow, or complain about the heat and humidity. And I’m at a loss to explain why they do that. Is it just small talk, or is it something more?

I know some people do suffer Seasonal Affective Disorder (SAD) where they are depressed during the winter months. There are places where the unusual winter weather causes genuine problems for people – like the horrific traffic jams in Atlanta last month where ice and snow coated the twelve-lane highways while too many people were trying to use them. And I always feel great compassion for anyone whose life is upended by a tornado or a hurricane. But that’s all different from griping about another day of cold weather.

I suppose I should consider the weather a gift, an easy tool to use for small talk, but sometimes I wish there was a bit more substance behind it all.

How’s the weather by you these days?

Asperger’s and Christmas Stress

Let’s face it, the holidays are stressful for everyone. Throw in the social anxiety and sensory issues associated with Asperger’s Syndrome and Christmas can be a living hell – but only if you believe it has to be!

What? As adults, we face a great deal of Christmas expectations, from decorations and office parties to the right holiday clothes and dinnerware, and, of course, the perfect gifts for friends and family (one day that Lexus with the big red bow will be in my garage! Riiiiiiiight).

But those expectations are learned. We are conditioned to behave that way; we fall into a pattern of stress. If we tune into our real selves, listen to what we need and ignore the messages yammering at us about how we are supposed to be, we’ll all be better off.

Let me tell you an improbable story about Christmas in America…

Seventeen years ago, my son was the youngest in the family. We had entered a phase where my generation had just become adults and I was the first to bring a child into the family circle. Nearing the age of three, he was becoming aware of Christmas – the trees, the lights, the music, the presents, the chaos.

Christmas morning arrived and we filled the living room: six loud, large grown-ups and one small child, talking and laughing and tearing open boxes. Although we visited my parent’s house frequently, it was still unusual to be there that early in the day. Having a brightly decorated tree in the middle of the small living room was also strange, as was packing the room with so many adults. Still, he seemed fine, and he sat down in front of his allotted pile of brightly wrapped gifts.

With a little urging he opened his first gift. I don’t remember exactly what it was, but he moved on to the second gift, and a third. Plenty left to go in his pile. With great anticipation, everyone watched him open that third gift – it was the year of the Tickle Me Elmo, and Grandma just happened to pick one up at the mall because she thought it was cute. A week or so later sales went through the roof and the toy became impossible to find.

He opens the Tickle Me Elmo, we snip it free of the bindings holding it in the box, everyone admires the coveted must-have toy of the season, and then the adults tucked into their gifts as the laughter and conversation continued. Gotta get everything unwrapped and move on, right?

After a while, we realized someone hadn’t finished opening his pile of gifts. In fact, he wasn’t even in the room anymore! My brilliant little boy, overwhelmed with sound and light, feeling no driving desire to open every gift in sight, quietly took his Tickle Me Elmo and removed himself from the situation entirely, relocating to a quiet, safe room where his regular toys were kept. When the adults approached him, he tried to get away, clutching Elmo and protecting himself from the chaos.

He paid attention to his needs. He didn’t let the pressure of participation or the drive of greed push him into doing anything he didn’t want to do. He was charmed by his new toy and decided it was time to relocate, for his own benefit.

This holiday season, listen to your own needs. Most people need quiet time to appreciate the beauty of the season. Go for a walk and admire the lights in your neighborhood. Make a cup of tea and sit by the fireplace. Or find a quiet corner in a safe place and enjoy something new. Follow the wisdom of a three year old, and the happiest of holidays to you!