Autism Study cites higher autism estimates: 1 in 38

The recent study published May 7, 2011 in the American Journal of Psychiatry indicated that the estimates of autism incidence are much higher than previously thought. This study out of South Korea reveals that the prevalence of children known to have autism or are at risk of developing it is 1 in 38 children. As the study noted, many of these children had not been counted in previous prevalence studies, and may have been mainstreamed, undiagnosed and untreated. Whether it is an over estimation of the numbers or not, it should definitely make us all stop and think of the ramifications of this significant health crisis. Children with autism require early intervention from trained personnel. When they are provided the support needed, these children are able to communicate their needs and desires, are less frustrated, less likely to develop maladaptive behaviors, and thus increase their chances to be included in the mainstream of the education system and to become productive citizens. However, there will always be some people with autism who are going to need more involved services, and some that will need supervision and support the rest of their lives.

This burgeoning number of people with autism growing into adulthood is already overwhelming school districts and the local Regional Centers who offer a variety of services. On top of that, most of these people are Medical recipients. These numbers continue to grow at the very same time baby boomers are beginning to retire and will also require more health care funding. The impact on Medical and Medicare is becoming more dramatic.

In 2004, the San Jose Unified School District (SJUSD) formed a public-private collaboration with Morgan Autism Center to provide special education services for the SJUSD children with autism. This program has grown from one preschool class in 2004 to six classes in 2011, totally 60 children. Had SJUSD not done this program, most of the children in the program would have been either referred to a County program or a more expensive non-public school, costing the district hundreds of thousands of dollars per student. In addition, the school district was able to save considerably more by not have to fight parents in mediation cases, as most parents are very satisfied with their child’s progress within this collaborative effort. Morgan Autism Center also works with Santa Cruz County Office of Education and on a smaller scale, many other school districts.

Morgan Autism Center works with the district teachers, aides, Speech therapists, Occupational therapists and Behaviorists to help them understand the autism learning style. Training is important to any successful classroom but for children with autism it is especially critical. Like any of us, when these children feel they are being understood, and their needs are being met, they can be ‘available’ for learning.

More collaborations like this are needed. Private organizations like Morgan Autism Center with over 40 years of experience with people with autism can provide the expertise necessary to help school districts, agencies, transition programs or adult programs. Our purpose it to help these other entities build capacity within their own organizations, because we know this problem is not going away - it will only continue to grow.

Moms of children with autism

Being a mother is certainly a challenge. But being a mom to a child with autism makes that challenge exponentially difficult. Often, these moms have to sacrifice a career to stay home and be available for their child's needs - all the way through adulthood and beyond. Given that strain, the frequency of sleep deprivation, the extended toilet training years, tantrums, and many marriages do not survive.

So, hats off to these moms - to Henry's mom, now in her 80's, who spends their time together keeping his calendar very full, taking him to events every day after program and on the weekends; to John's mom, who won't accept a before the opera Mother's Day luncheon date, because John loves to go to the Farmer's market on Sunday mornings; to Christopher and Zachary's mom, who went through the trauma of having their house burn down and spent 4 months in a hotel room with her two boys; to Jennifer's mom, who drives her to and from school every day usually on little sleep, but still keeps her cheerful demeanor; to Kyle's mom, who has to be vigilant all the time as he is an escape artist and frequently attempts to race out of the house to the nearby park, crossing several streets in the process. We have a few moms of autistic children on our staff, whose resilience and energy is to be admired, because we know they are not going home at the end of the day to put their feet up.

These moms never seem to complain of the hardships or difficulties and truly cherish their children - as only a mom can. And you will never hear more hearty laughter than that of a group of these moms. At a recent parent meeting, the parents - (mostly moms, one grandfather) I commented that I thought they were having way too much fun as the laughter was continuous and raucous. They all laughed and one remarked, "its better than crying." And that seems to be their attitude, move on forward and enjoy the small pleasures of each day.

To all moms living with children with autism - we salute you and celebrate your determined and wonderful spirit. Happy Mother's Day!

Friday before vacation.....what music can do!

Last Friday was that day - the day before our spring break. We must have been more than ready. Tired of weeks of rain, hail, and generally lousy weather, Friday came along feeling a bit more promising. Seemed like an ordinary day, people doing what we normally do. And then after lunch in our garden courtyard, our one man orchestra, Jim, got out his electric guitar. Brad joined him and set out the sound system and hooked up his computer loaded with favorite songs. Jim played a few notes and slowly, one by one, staff and students came out to sing. After several simple songs were sung, things began to get more exciting. Sudeep sang soulfully with the Righteous Brothers about losing that lovin' feeling, Jason sang a wild version of "Gloria" - you know, G-l-o-r-i-a, GLORIA!!! More people joined in and soon, the dancing started. By the time they got to the Black Eyed Peas' "Tonight's Gonna Be a Good Night" more than half the school was out dancing in the halls. A 'very MAC afternoon', we've come to say about such spontaneous bursts of pleasure. Delight all around as we packed it all up, got ready to go home and happily went on our merry ways, ready for vacation - and yet eager to be back.

Another difficult week

This last week was another tough one for Jeff. Like most of his rough periods, this was brought on by Jeff's perceptual misperception of conversations taking place around him and his very egocentric assumptions of what he has heard.

I had come down to our Adult Program just to visit and was quickly alerted by Sue, the Program Director, that Jeff was very upset because he thought his group home was going to the snow on the weekend. Jeff thought that meant he would have to ski and he doesn't know how. This idea terrified him. Apparently no one at his group home had said anything about skiing; they were merely contemplating a trip to the snow. However, another client in our program had been talking to everyone about her ski trip the previous weekend. Jeff very likely overheard her conversations and made the erroneous connection that going to the snow was synonymous with skiing - and he was petrified. Unable to tease out what was real and what was not, Jeff was swearing and threatening to hit anyone who mentioned snow or skiing. While Sue tried to reassure him and called the group home to get the actual story, Jeff relaxed a bit and I was able to talk with him and explain that these two different activities could be mutually exclusive. I could tell Jeff was trying to understand and at times, it seemed he did get it. But his anxiety over feeling compelled to do something so scary as skiing simply overwhelmed any logical conclusions he could hope to come to and about every 15 - 20 minutes, he would become upset again, requiring constant assurances that there would be no skiing.

Later in the day, Jeff was still distressed about the possible trip, so when I came down to visit, I wrote out on a piece of paper " I do not have to ski - ever!" this despite his staff offering many the same information throughout the day. I had Jeff read the sentence, cut it out, and told him to put it in his jacket pocket. Anytime he started to think about it, I reminded him, just take it out and read it. Seeing it in print seemed to make more of an impression on Jeff and he folded it carefully and stuffed it into his pocket. Then, Jeff came down to my office to listen to some music and with a few reminders, seemed calmer. It was St. Patrick's day as well and throughout the day, we were able to distract Jeff by talking of corned beef and cabbage and singing Irish songs that none of us could remember all the words to. By the time he left the program for the day, Jeff had calmed down considerably.

The following morning, the staff had their usual morning staff meeting and talked about Jeff's anxiety and the group home's plans. Unfortunately, one staff member was late due to traffic and missed the part of the discussion about how the trip was not even going to happen, not skiing, not snow, nothing. As the clients came in, this staff person casually asked Jeff how the plans were going for the snow trip. Big mistake! Jeff went off like Mt. Vesuvius, yelling and shouting and threatening to hit the staff who asked. Jeff had been told by his group home that the snow trip was off, but this question made it all come to life again as if it were imminent. He was still nervous and again needed assurances throughout the day that skiing was not on his agenda for the weekend. But the fragility of his understanding kept the staff on their toes all day and no one talked about snow unless it was to remind Jeff that he wasn't going.

And so this morning, when I came down to visit, Jeff instantly called out " I had a great weekend and I never worry anymore! And my dad made me corned beef and cabbage when I stayed with him on Saturday!" So, we're back to normal, or at least what is a state of equilibrium for Jeff. With his worries behind him, there we will stay until the next misunderstanding happens.

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.