Autism at lunch!

On Friday, I had lunch with a most charming but energetic lunch mate. Most lunch times involve actually eating - but not necessarily so with Jeffrey! With Jeffrey, consuming lunch is an after thought to the more exciting opportunities food presents. Juice boxes make superior vehicles for shooting liquid great distances; dipping sauces are akin to the ink well and the quill, with the table ever available to write upon; and hurling items just to see whither they may land is never a boring activity.

Jeffrey is a delightful boy who brings to mind a human pinball machine. As he moves through his environment, his constant curiosity compels him to tap, grab, knock over, climb onto, or pull at whatever is within arms or legs length away. He bangs, clangs, and bumps his way around - and then, unexpectedly, calms, looks at me with those beautiful blue eyes and asks sweetly if I would "pop cheek" meaning can we blow bubbles that will pop on his cheek. I tell him "of course!" and he smiles contentedly and settles into eating his banana, but on this day the delicious looking chicken and mashed potatoes his mom sent, aren't touched. He remains quiet until a delighted staff announces the amazing accomplishment of another student eating a piece carrot for the first time, and Jeffrey erupts with a rhythm, banging his wrist on the table, knocking his knees from below and singing a tune. The raisins in his lunch go sailing across the room, so its time to pack up the lunch and head off to the bathroom. On the way, there is a picnic table, a small trampoline outside another classroom, and the drinking fountain. Jeffrey puts away his lunch box, after first somersaulting across the floor, then throws open the door to maximize the bang against the wall, and runs headlong toward the bathroom. But first he climbs on the picnic table, a few jumps on the trampoline, on to the drinking fountain to take a mouthful of water, spit it onto the ground and then races into the boys room. Amazing energy! When finished, he runs back to the classroom, all the while I am close on his heels, and we together arrive at the large bottle of bubbles placed high on the shelf, out of reach. He is so excited and happy with the anticipation of bubbles, that he races back out the door, banging it sufficiently, onto the picnic table, back to the benches and then waits quietly while I begin to blow bubbles. Soon we are joined by another bubble lover, and the two boys share their absolute delight in trying to catch bubbles blowing all around.

Such innocent fun! Don't we all wish life should be so clear and simple? As I return to my office, I never cease to marvel at how lucky I am to be able to leave my desk, even if only for a short time, and be with the students. Working with people with autism is very much a 'zen-like' atmosphere - relishing and experience the present. They are living in the moment, and usually with little thought to what's next or what came before. They manage to incorporate 'mindfulness' into their every day activities without much effort. Gives a different meaning to having presence of mind, which most of us are always striving for. Just another reminder that we probably learn more from them than they from us.

Valentine mystery

I first wrote about one of our adult clients, Wanda, last year and her confusion about the nuance and subtlety of social situations but the issues continue to confound her. Holidays, even minor holidays such as Valentine's Day, bring this topic to the forefront. Wanda gets very distressed because of her confusion about when and where its okay to touch others, particularly giving hugs. Wanda wants desperately to hug people. Because of her inability to distinguish circumstances of when a hug or arm around another is appropriate, she's been told various things to help her, such as its okay on a special occasion or when you see a friend after a long time. But what constitutes a 'special' occasion? And now, here we are at Valentine’s Day and to Wanda, this is a day equal to something as extraordinary as winning the lottery or something akin to that.Why shouldn't you hug everyone on Valentine's Day or even Halloween? These days are 'special' to Wanda. And if Christmas is special, why can't she hug everyone in the program? Remember for Wanda, everyone literally means everyone. To the point that she would chase staff members into the parking lot if they were leaving before she had an opportunity to hug them. Needless to say, that became a bit too much, in addition to being dangerous. Wanda is so single minded, she was unaware of moving cars, being so intent on catching her yet-to-be-hugged person. So, we had to modify and try to further explain that one. Now, mind you, this is something that Wanda and I - and others - have talked about with her before, in fact quite extensively over the years. But it still doesn't make sense to her. Social occasions are an enigma for her, and it is impossible to explain every situation that might occur, because there will always be an exception to the rule. And the problem with hugging is not only when you should offer hugs, but to whom? Understanding the subtlety of social relationships, the nuance of body language is completely baffling.

For Wanda, every new situation is frustratingly mysterious requiring explanations and general rules as each one is different and she doesn't generalize from one circumstance to another. Yet, she tries very hard to maintain her composure and very good manners and would be mortified and deeply saddened to find out someone was put off by her behavior. When I first wrote about this last year, Wanda was in yet another new situation of confusion, this time involving the university where she attends a conversation clinic with other clients in our program. Wanda wanted to hug the student interns from the university each time she saw them, which was twice a week before and after each of the sessions. This was becoming an obsession and making the interns uncomfortable. Once again, we had to go through the explanation of why and when and hope that some part would make sense to her. Wanda had many questions about her observations of others, but why and when were those appropriate and her attempts not. To Wanda, it seems so unfair. She agonizes about her own internal conflict of trying to do the 'right' thing with others, while wishing she could freely act on her own compulsions. It starts off so innocently: people usually are kind and will willingly let themselves be hugged by such a sincere and eager person as Wanda is. But this quickly can change as the intensity and insistence of her hugging increases to the point of being awkward. And then the rules have to be reiterated once again.

I have tried to help Wanda understand the difference between friends and family and

people who work with her. I explained that I don't hug staff members very often even on

special occasions because we all work together and we see one another daily. Does she get

it? Over this last year it seemed we made some progress on her understanding and

acceptance of what was said. Wanda has been able to give me a summary of what we have

discussed these many times. But I know better. I know that someone somewhere will

break Wanda's understanding of the rules and hug another someone, and for Wanda, it

will be another brand new situation.

Autism Rate Triples and Research is SLOW!

A report on February 4, 2011 in the California Watch notes that the autism rate in California has tripled - tripled!!!! - since 2002. http://californiawatch.org/dailyreport/autism-rate-triples-among-k-12-students-8488. From the Lucile Packard Foundation come the numbers that indicate in 2002, 17,508 children in California were diagnosed with autism. In 2010, that number rose to an astonishing 59, 690. What on earth is going on to cause this? Putting aside the extreme emotional toll autism can take on families, and just from an economic point of view, how can the California economy manage under the strain of this burgeoning population? These kids are expensive to educate, manage, and for most of them, house for the whole of their lifespan. And this while baby boomers move on to Alzheimer's!

In my last blog, I referenced an article in the Jan/Feb Stanford Magazine about the breakthroughs in autism research. One of the scientists quoted was the brilliant Dr. Sophia Colamarino. Dr. Colamarino spoke at the Morgan Autism Center Conference in 2008 and related the latest findings in research. What was encouraging then, and slightly hopeful in the Stanford article are the different 'strains' of autisms researchers are looking at with the idea that each may require distinct treatments. And some trials with mice showed promising results that select neurological disorders might possibly reversed. But that was in 2008 and here we are in 2011, moving ahead by painfully slow increments, with nothing particularly new to report. Unless, you note that the autism rate has tripled in the meantime. That certainly is newsworthy!