the mystery of nuance

Last week, one of our adult clients, Wanda, was 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?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 is not only when you should offer hugs, but to whom? Why shouldn't you hug everyone on Valentine's Day or Halloween? Those days are 'special' to Wanda. And if Christmas is special, why can't she hug everyone in the program, (remembering that for Wanda, everyone literally means everyone. To the point where she would chase staff members into the parking lot if she did not get 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 before, in fact quite extensively over the years. But it still doesn't make sense to her. Understanding the subtlety of social relationships, the nuance of body language is completely baffling to her.

So, when I met with Wanda last week, she was in tears about yet another situation that was frustratingly mysterious. Every new situation requires explanations and general rules because each one is different and Wanda 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. So here she was, in a new situation, this time involving the university where she attends a conversation clinic with other clients in our program. Wanda wants to hug the student interns from the university each time she sees them, which is twice a week before and after 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 will make sense to her. She 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.

I tried to help her 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. Did she get it? Her tears slowly subsided as it seemed we made some progress on her understanding and acceptance of what I said. She was able to give me a summary of what we came to after our long chat. 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.

Morgan Autism Center's 8th Annual Autism Conference

The Morgan Autism Center's Eighth Annual Conference this last weekend of Friday, September 25, Saturday, September 26, and Monday, September 28 was a resounding success. Friday, we were treated to an electrifying presentation by the brilliant Dr. Sophia Colamarino of Autism Speaks. Dr. Colamarino spoke encouragingly of the latest updates in biomedical research to a spellbound audience. Although she is speaking of very complicated and involved information, Dr. Colamarino presents in such a way that even non-scientific listeners can understand.

Saturday, we had the very engaging and informative Dr. Jed Baker talking about 'No More Meltdowns - Managing Challenging Behavior and Social Skills Training". Dr. Baker's presentation was excellent, entertaining and very well received. In the afternoon, we had an energetic and enthusiastic Raun Kaufman of the Autism Treatment Center of America telling his story as a child diagnosed with autism and recovered through his parents very difficult, long and in the end, successful fight against the diagnosis.

On a separate track, we had medical information available, provided by Dr. Pilar Bernal of the Kaiser Foundation, Dr. Lisa Croen, Senior Research Scientist of Kaiser, Dr. Ann Reynolds Professor of Pediatrics, Director of Child Development Unit at Children's Hospital in Denver, and Dr. Glen Elliott, of Children's Health Council.

We had well attended breakout sessions by Dr. Shannon McCord, expert in augmentative and alternative communication, Nick Boldrey, Education Specialist, with expertise on managing the challenges of adolescence with ASD, and an always informative presentation by Mike Gilfix, regarding Special Needs Trusts. Evaluations indicate a very favorable response to the day.

On Monday, Raun Kaufman did a workshop for the entire day to a standing room only audience of parents and professionals. Everyone left feeling energized and excited by his approach, and though his suggestions is not to replace school work, it was clear to all how his ideas could be infused into already existing programs. Much of his focus was on shifting our cognitive paradigm to acceptance and through acceptance achieving the changes or progress we are hoping for.

As one who has worked in the field of autism, I have made many assumptions about 'group homes' and the impact such a move can have on a family. Twenty years ago, there were not many homes that seemed worthy  of being rated as even moderately good, and most were well below. I remember visiting a home of one of my students along with another teacher where the staff so clearly did not like the student, it was painful to watch. They did very little to hide their feelings even as we observed them. As my co-teacher and I, driving in separate cars silently parted ways, our eyes met in my rear view mirror and we both sadly shook our heads, feeling helpless and frustrated. 

Then too often it seemed that difficult persons with autism were over medicated with powerful drugs that they might not have needed had the staff been better trained to understand their behavior and how to manage it. But things have greatly improved over the last two decades, and expectations of group homes and the quality of care is significantly better, though still not perfect. 

But back to making assumptions. Probably the most common assumption I have had about group home placement is that once a parent places a child, after the initial anxiety, it is followed by relief when a good home has been found. I know from long conversations with parents how they agonize over the decision to even think of placing a child. But the pain of actually making the placement is something to which I have not given enough thought, and must keep in mind in helping parents with a very difficult transition. Recently, one of our adult clients turned 50, and his mother came to our program to help celebrate his birthday. Since I knew he was also being moved to a group home that weekend, I casually asked his mom how she was doing, and was completely surprised when she burst into tears. And yet, how thoughtless of me to think that after 50 years as the sole caretaker, she wouldn't be overwhelmed by this tremendous upheaval in both their lives. I remember a passage in Judy and Sean Barron's book There's a Boy in Here when Judy describes Sean's leaving at age 10 to live in a facility: 

I lay awake most of the night. Images flocked through my mind of Sean lying alone in that strange bed, abandoned, surrounded by strangers. He would be cold. I knew, because he always kicked off his covers, and we always went in and covered him.

I know I have been remiss in addressing and acknowledging the true depth of sadness and pain parents must be feeling in making this decision and then the move itself. How do parents deal with the grief, the guilt, and emptiness of the home? Life really is unfair.

Vaccines, yet and still

Although there have been a multitude of studies that suggest that vaccines are safe, among many parents of children with autism, the jury is still out. And now with the H1N1 virus and concerns of this public health crisis causing a possible pandemic, parents are being advised to add yet another vaccine to the many already given their children.  Parents are encouraged to give their children the flu vaccine at 6 months of age and then annually until five years of age. But do we know yet if these vaccines are safe, let alone effective?

Children are now routinely given 48 doses of 14 vaccines by the time they are in kindergarten, almost double what was given 25 years ago. In fact, newborn babies are given their first vaccine, the Hepatitis B shot while still in the hospital. Do we have any idea if more vaccines are better, safe and effective? Is it possible that this increase in the number of vaccines administered could account for the increase in the diagnosis of autism? 

If I had a young child today, I'm not sure what I would do regarding vaccines. While I understand the needs of the greater public, I also am very suspicious that children with autism have compromised immune systems, which very likely would not be apparent until well after their first birthday and maybe not even until three or four years.  With all the toxins in our environment, it would certainly be close to impossible to pinpoint a particular culprit, not to mention the genetic susceptibility involved. But why not eliminate or reduce the chances of some of the known toxins? Are we trading the chance of some infectious diseases in early childhood for chronic disability for a lifetime with a minority of children?

With the pressures young parents have today to get back into the workplace and the use of daycare, every child is exposed to many more things than children in the past. And so the risks increase that infectious diseases will spread and the need for vaccines remain important. But maybe the double and quadrupling of doses at one time could be eliminated, and the time lines could be reviewed to lessen the impact. Maybe just a shot in the dark, but something should be considered.

strokes and autism

I'm just finishing an amazing and easy to read book "My Stroke of Insight" by Jill Bolte Taylor. In her descriptions of her disabilities from the stroke, I am so aware of the similarities between the stroke victim and a person with autism. 

Jill Bolte Taylor was a Harvard trained brain scientist who, at only thirty seven, had a massive stroke that effected the left hemisphere of her brain. With her neuroanatomy background, Dr. Taylor is able to describe her inabilities during her slow recovery - but also her new insights, not available to her before her stroke. She describes not being able to talk, but being able to sing, difficulty retrieving words, but tuning into other's emotional state. The biggest difference here is that persons like Dr. Taylor have a wealth of life time experiences upon which to draw during their recovery (when recovery is likely). Whereas a person with autism is either too young when the autism strikes or never is able to develop or understand a cognitive awareness of his/her surroundings.

The most striking thing, though, in Dr. Taylor's description of being on the "right" side of her brain, is the feeling of Nirvana she had; feeling one with the universe, like "fluid.....and in flow with everything around me." She found when she didn't tune into the left hemisphere's "brain chatter', she was able to see a completely different world, filling her with inner peace. She also described her focus on the present, and how every moment she had was rich with experience and existed in complete isolation. She notes how as each new moment happened, the "details of the past lingered in an image or a feeling, but quickly disappeared." The Zen like experiences of our students come to mind, and their contentment to be in "their own world". I thought of Clara Claiborne Park's book "Exiting Nirvana" about her daughter with autism, essentially describing the same thing, and even using the word "Nirvana". We know the students with autism prefer to lapse into reverie, and drawing them out can be anxiety provoking. 

This book was well worth reading for anyone who works with people with autism - it is encouraging to hear about the plasticity and resiliency of the brain, but also in Dr. Taylor's arduous recovery, she describes how she was able to overcome some of the very similar disabilities as we see with autism. 

study to follow families

A network of autism researchers, the Early Autism Risk Longitudinal Investigation, (EARLI) will be following 1200 pregnant women who already have a child diagnosed with autism. The good news about this study is that not only will they be looking closely at genetics and biomarkers for risk factors, but also possible environmental causes. A number of studies have been or are being done on genetics, but not enough focus on environmental triggers. That makes this new study most encouraging, though results are far off yet. Two California centers, the UC Davis MIND Institute and Kaiser Permanente of Northern California will be of the four centers involved with this study. You can read more at: http://www.medicalnewstoday.com/articles/153229.php

The best laid plans...

We all know that none of us can predict the future. But when you are responsible for another person's welfare, that unpredictability must figure into your plans. And everyone needs a back up plan for the unforeseen events that can wreak havoc in anyone's life. For no matter how fabulous your intentions may be, if you are not able to implement them - for whatever reason - your good intentions are lost.

This has been brought home to us once again at Morgan Autism Center. Here's the story. A forty year old autistic adult client has lived all his life with first both his parents, and when his mother died ten years ago, his widower father. His father, out of respect for his wife's dying wishes, promised his wife and  that he would never place his son in a group home. And until a week ago, the plan was the two of them, father and son, would live together until.....until what? No contingency plan was thought about nor talked about to prepare this autistic man for the traumatic change he would have to face should he suddenly need care away from his father. And because he has some health issues, let alone behavior and anxiety issues, this care is not easily done by anyone.

Now his father is suddenly very seriously ill and needs to be hospitalized. Its Memorial Day weekend. The Regional Center has a crisis team, but no home ready on such short notice for this client, who is traumatized by the uncertainty and shocking change to his life. A cousin who lives locally (but who has his own two year old and had no expectation to take this on) is stepping up for a few days. But then what?

Everyone needs a contingency plan. We all have to cover our bases for when the unexpected happens.