Anxiety and Autism

Several days a week, around 1:30 or 2 in the afternoon, I get a phone call from one of our adult clients, Jeff. He will ask if its okay to come down to my office and chat and, he hopes, listen to some music on my laptop. If I don't have a meeting, I invite Jeff down. Jeff arrives with pronouncements about whatever is on his mind. His conversations tend to be one sided, and I've learned over the years that you really have to listen to Jeff to understand what he is trying to tell you.

Jeff can be quite entertaining in an innocent, yet amazing way. He delights in talking about nationalities, and how he is Swedish or German or Italian or whatever nationality is on his mind - or whatever is the ethnicity of the latest person he has met. He has a very convoluted view of how people get to be who they are, and makes most unusual combinations of ethnic groups. For instance, a person from England who happens to be Jewish may become a "Yiddish British" or an Australian may morph into a Tasmanian Mexican, depending on their origin, according to Jeff's own understanding of geography. When he's focused on nationalities, we are pretty certain, all is right in Jeff's world.

But this last week Jeff came down as usual, and immediately announced definitively that he no longer worries. We've all ascertained that such a statement, offered in such a way, usually means something quite different. So, I began to explore. First, I acknowledge that of course, he doesn't have to worry, because he has nothing to worry about.

"That's right!" he exudes exuberantly, "I'm all done with that!"

Then, I wait to see what follows, and I never have to wait long, for Jeff is as garrulous as anyone I know and can out talk the most chatty of persons.

"I'm really healthy now," Jeff states, and then we begin to get to the core of his anxiety. His health is always a concern to him, and indeed he has some health concerns. But Jeff worries about anything related to doctors - every year he frets about getting a flu shot, and typically the month before he is to get it, he begins to speak constantly of flu shots, telling us how he is not afraid of that, no sir, not one bit!

"The doctor said everything is fine and I don't have to go back for another year!" Jeff says enthusiastically.

Jeff is 41 years old, has high blood pressure, sleep apnea, and recently has lost over 60 pounds, though he is still overweight. When he was at his heaviest, he had trouble with breathlessness, and was very anxious he was going to have a heart attack. He is aware of common ailments having gained just enough information from TV shows to make him nervous. And, because of his egocentricity, he is a bit of a hypochondriac. If he hears someone is sick, he assumes he must be, too. Our recent restriction at the school and adult program on peanuts because some students have severe allergies, created hours of discussion for Jeff. After much talking, he finally came to understand he does not have this problem.

During the time when he was his heaviest, Jeff visited a new doctor who asked him innocently some questions routine for a new patient intake. Unfortunately for that doctor, one question was "are you depressed?" which to Jeff meant "you are depressed." Jeff became extremely upset. He began swearing and was very distraught, and even the next day when he came down to my office, he was still ranting about "that *#~$#!&* doctor!!" each time he thought of him. So, in addition to our Adult Program Director talking with him extensively, I also spent some time reassuring him that the doctor was simply asking a question and it didn't mean Jeff was depressed.

This seeing the world from the perspective of self is always an issue for Jeff and many of our students and clients. As they perceive the world always from their own point of view, they typically misunderstand most events and conversations around them. Any reference to subjects they are anxious about instantly (from their viewpoint) becomes about them. So we have to listen constantly to their conversations, observe their interactions and help them interpret what we can only guess they may be internalizing. We may not hear about it for weeks or months or we may see the person immediately demonstrate anxiety or absolute fear that something they heard, an offhand remark, is an imminent danger to them.

Jeff's remark that he has no worries can't be taken at face value. It means instead he has been worried and probably significantly. Because he was talking about the visit to the doctor, it was pretty evident that Jeff was concerned about his health and afraid some doctor would ask him something to make him believe he has some new disease. The doctor who asked if he was depressed is long gone, as Jeff couldn't even tolerate the idea of ever going back to him. He gets upset at the very mention of his name. So, when he came to my office, I once again reassured him that he needn't be concerned, he has nothing to worry about and that all is right with his world. Jeff happily accepts my reassurances and we listen to a favorite song of his. But I know we are not done with his concerns and we will have many more conversations to clarify his always confusing environment.

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!

Autisms Origins?

A provocative article was published in the January/February Stanford Magazine called "Breaking Through". The article zeroes in on research being done to answer the fundamental question: what is the underlying biology of autism? (http://www.stanfordalumni.org/news/magazine/2011/janfeb/features/autism.html) Rather than focusing on the rapid increase in the numbers, blaming vaccines, genetics, or even the environment, these researchers believe that only by understanding the biology of this perplexing disorder, will we ever have breakthroughs.

It has only been in the last few years that we have heard autism being referred to not as one disorder, but instead, a host of distinct disorders with the catchall name of autism. People talk about 'autisms' rather than the singular autism alone. With the idea of teasing out the many possible differences in the basic biology causing the symptoms, it would logically follow that treatments for each distinctive manifestation would not be the same. And the idea that you could possibly reverse the symptoms of such a profound disorder is extremely exciting. Note in the article the research being done on mice with fragile-X. It seems that the drugs they are experimenting with are actually reversing some neurological symptoms. This is very promising, though likely a long way off. But when the only current effective intervention is educational, this gives us all hope that someday this will not be seen as a lifetime disorder.

Feeling solitary with autism

Over the holidays, I asked a widowed mom and her grown autistic son, John, to join my family for dinner. John is in our adult program and she and I frequently meet for coffee. When we meet, I usually bring John with me from our program, so we don't have the confusion of waiting for his ride home. And since my kids spent their formative years working in the after school program, they know John well, too. So, it seemed like it would be nice to get together. Unfortunately, the mom had another commitment and couldn't make it. But she said wistfully, "You don't know how much it means to me to have both John and I invited to a family affair - people rarely include John in any invitations." This statement reminded me of the solitary lives that are sometimes lived by families isolated by autism. And while it made me feel sad, it also reminded me how much others are missing. Being with a person with autism is a slice of our human nature that can be at once revealing, baffling, mysterious - but that's all part of being human. Just a view from another side.

So, if you know a family with a child with autism - no matter how old that child may be - take the trouble to invite them to participate with you and your family. It will be good for everyone involved!!

Hopes for the New Year

Here are some of my hopes for the new year:

1) We will discover the cause of autisms in so many children.

2) The discoveries will lead to more effective treatments and perhaps even prevention of autisms developing.

3) In the meantime, people will go beyond the acceptance of people with significant differences, embrace their uniqueness, and indeed delight in their quirky personalities.

4) Recognize that just because we can measure something, doesn't mean it necessarily matters. For how can we measure quality of life events, art and music, the enchantment of sharing a smile, and connections we have without words?

So, just a few thoughts for the new year. Here's hoping!