Friday, July 29, 2011

I Feel for You

I feel sorry for those who think autistics have no ability to empathize. In my case at least, Apsperger’s left me too vulnerable to the emotions of others.

When I was a little girl, I smiled until my face hurt. I was nowhere near as delighted as the constant smile seemed to indicate, but I was not miserable either. The unrelenting smile was, I now believe, the product of rigid autistic thinking had led me to a false conclusion that like everything else in my world, there was a correct and incorrect path. Blocks must be stacked in a certain formation, there were right and wrong answers to every imaginable question. By that admittedly skewed, reasoning , the same principal must have applied to emotion. There was one correct emotion: happiness, which was always expressed with a smile.

Other emotions existed, that was irrefutable. Whatever other explanation could there be for tears or frowns? I avoided wearing such expressions on my own face though, because they and the emotions they represented were obviously incorrect. However I couldn’t seem to control the emotions of others, which was maddening , like sudden mind-reading abilities in the science fiction stories to which I was always so drawn, terrifying telepathy that inevitably landed protagonists in the equivalent of their planets’ rubber rooms.

I would not describe this way of thinking as healthy. I wasn't simply irked when an adult or another child would refuse to comply with my orders to smile, I was furious and terrified and would not, could not, calm down until they did. What complicated matters more then, and continues to complicate them to this day is my impaired ability to read facial expressions and body language. Like many autistic people, I’m capable of seeing macro-expressions , broad smiles, uncontrollable tooth-grinding rage, but more subtle expressions remain a mystery to me. I still can’t tell if the not-entirely happy person next to me is mourning the loss of a beloved friend or the loss of a nail tip they just had manicured. Although I’m better equipped to handle all the input as an adult than I was as a child, between the sensory overload of loud music, bright lights, forced conversation (especially that autistic bĂȘte noir, the inescapable natter of small talk.) my sensory processing abilities are already taxed. On top of all that I often feel people feeling at me. Whether they notice my presence or not, I notice theirs, and my ability to process their emotions, the origin and nature of which I still have difficulty interpreting, causes me distress.

It’s a mistake to confuse an inability to sense with an inability to care.To the extent that I am able to resonate with other people’s emotions, I care intently. Further I am aware that I am not aware of what people are feeling and compensate by the seemingly simple but actually complex method of inquiring.

I don’t like to think about that part of my life. I have never written about it. But I recently had a conversation with one of son’s teachers that sent chills down my spine. She told me about a little girl with the same diagnosis as mine, Aspergers. Like me she has always been verbal, but when someone she cares for does not produce a smile that lives up to her expectations she will crawl up on their lap and try to force their lips into what she considers a properly happy expression. I remember doing that .

My autistic son is minimally verbal, but there is no doubt in my mind that his empathy is as powerful of as that of those who can articulate it. He’s been using what words he has to ask me if our cats are happy. He’s been asking his teachers if a particularly close friend of his in school is happy. Not curiously or occasionally, but frantically and repetitively. No amount of reassurance seems to soothe him for more than a moment when he gets into one of these loops. Medication helps. We also have high hopes for social stories, and since we want to teach him that he has some power to influence others positively we make suggestions about concrete things he can do to help. Finally, we emphasize the transitory nature of emotion. I suspect the notion that whatever is going on in a given moment will last forever is a common autistic fear. I have it too. So when he seems to be frightened by his own reactions to others’ emotions, I stroke his hair and I remind him that smiles and frowns are like rain and sunshine. Neither lasts forever. Just when you think the weather cannot ever change, it does.

I have faith in in my son to resolve this confusion just as he has conquered other perplexing aspects of a world not tailored to his needs, but he’ll need help. He needs to learn that he does have power, not to change the weather of people’s moods, but to react to them in a compassionate yet not all-consuming way. I am working on that skill myself, very slowly improving, but I believe his prospects are better than mine. What I do know from my own experience in this realm, and what I strongly believe when I observe him, is that pushing for greater empathy in an already hyper-empathetic child will not help and might even cause more distress and confusion for him. Empathy he’s got. Boundaries are what he needs. Shoring up some kind of emotional self-defense in one of the most caring children I can imagine, that’s what all of us who love him will spend the next few years doing. As parenting tasks go, I think it beats the hell out of trying to foment empathy where an exhausting abundance already exists.

Wednesday, June 15, 2011

Heeding Autism's Aesop

Anyone who has ever tapped on the window of, but cannot open the door to the world of normalcy (wherever that is) owes it to themselves to buy Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers by the luminously wise John Elder Robison, author of Look Me in the Eye, a 2007 memoir that well earned its place on the New York Times bestseller list.

I’m on the autism spectrum, myself. Like Mr. Robison I was diagnosed in my forties, which means I was born long before Aspergers was generally recognized as a diagnosis, too early for effective intervention. For me Be Different, the follow-up to Mr Robison’s ground-breaking memoir Look Me in the Eye offers more a confirmation than a revelation.

Sometimes I recognized myself and laughed. Some sections, like Managing Sensory Overload, figuratively hit the perfect note with me, when Mr. Robison describes his technique of isolating the music of one instrument at a time to avoid being overwhelmed by the sensory stimulation of an entire orchestra. (The only downside, of course, is when the one musician commanding your attention at the moment plays or sings off key. Ouch.)

Sometimes I recognized myself and felt my ears burning. In the (Not) Reading People chapter I found myself nodding vigorously at Mr. Robison’s memory of his inability to read any but the most exaggerated and frequently repeated facial expressions, and the confusion that deficit caused. If, as I had been told, a smile signaled friendship then I wondered, like Mr. Robison apparently did, how a person’s threatening actions could so contradict their friendly facial expression? Bullies often smile as they are bullying, so if another child came towards me smiling, it was hard for me to predict whether they were about to say hello or push me into the dirt. Eventually, I learned techniques similar to Mr. Robison’s to compensate, but my epiphanies seemed to come later in my life than they did in his. I’m relieved that he’s quicker on the uptake than me, and better at articulating the rules it took me so long to learn – and that he is teaching what are no less than survival tactics to the current generation of autistic people, which includes my own son.

Be Different presents a new opportunity to get acquainted with this author, in a book that’s every bit as compelling as his first. Yet here the tone is…Different. Like his memoir the incandescent writing is deeply personal, accessible to anyone who has ever felt like an outsider for any reason. But this time around, Mr. Robison acts as a kind of Autistic Aesop; he writes less a scorching memoir and more a series of directly illustrative biographical vignettes. There is a clear value here of the (literally) underlined morals of the stories to those of us insensible to the subtlety of, well, subtlety. If you’re on the autism spectrum or parenting a child on the spectrum, Be Different functions as a manual, just as its sub-title promises.

If you have no connection to the autism community, then I’d argue that you need a copy of this book even more than those among us who do. The diagnosis rate is rising so quickly that if you don’t already know someone autistic, you will soon. Bosses, shopkeepers, bus drivers, co-workers, and neighbors will all benefit from an heads-up to understanding that quirky person who will at some point undoubtedly pop up in their lives -- not wanting to offend, but somehow often offending; not looking to take offense but somehow taking it anyway. On the spectrum or off, it's hard to quell hurt feelings, but using Be Different as a guidebook we can all navigate through misunderstandings to compassionate clarity.

There are at least two generations of autistic people like the author and me, folks who never got a lick of intervention. All of us who often swear we were born on the wrong planet are trying to meet the non-autistic population halfway, but we need the help of non-autistic people to make a place for ourselves in this world and a meaningful contribution to it. The insight we all need, whether we’re autistic or not, can start the minute we start heeding the advice of one of autism’s most effective spokespeople.

You can find Be Different in any store or site that sells books. My website doesn’t sell books, so be assured, I’m not making a dime from this sales pitch. I just think Be Different will make a difference in your life.

Thursday, April 7, 2011

Don't Keep This Wish a Secret!!

Call it a dream for a better future, or call it just plain old educational advocacy: My fellow New Yorkers repeat after me: The next chancellor will be better. If we all say it together enough, as loudly and publicly as we can, there's a chance we can make this wish come true.

Wednesday, March 23, 2011

Sunday, March 13, 2011

NYC Movies and shows for kids on the autism spectrum.

Movies and shows for kids on the autism spectrum.

A series of screenings of movies and live performances tailored to the needs of autistic children. I have an autistic son myself and while I applaud AMC's Sensory Screenings I feel that most autistic children do not have sensory problems with the movie theater environment (as long as the sound isn't POUNDING and things aren't PITCH BLACK).

What our children mostly need is a "No Shushing" environment where talking, vocal outbursts and the need to get up and move are respected. I have arranged for the SoHo Gallery for Digital Art, 138 Sullivan St, New York, NY 10012 to donate its screening facilities on Saturday afternoons to this project.

We & Our Kids Are Everywhere...

The Komo Centre for Understanding Autism was established in 2006 by Elizabeth Kaleeba, the parent of an Autistic child.The centre was started to provide education, care and support for children and families affected by ASD (Autism Spectrum Disorder). It is the first provision of this kind in Uganda.

Please visit their site to see how you can help their vital work:

If you are on Facebook. please Friend and support another good resource,

Autismcentre Uganda
Check out their upcoming fundraiser at