As Time Goes By.....

As this decade draws to a close, I can't say I'm particularly sorry to see it end. What with 9/11, Enron, unnecessary wars, state and federal budget fiascos, the Wall Street mess, obscene executive compensations, political inertia, and terrorism lurking around every bend, I say good riddance to a miserable era.

While the world was falling apart, this was a very eventful decade for me. I took over my position as Executive Director of the Morgan Autism Center in 2000, after 23 years working as both a teacher and program director. This was not a planned transition and took some time adjusting to the suddenness of it. Along with my change in position, the program needed to move to a different site after 21 years in Los Altos, but had not yet identified that site, with time quickly running out. This was just before the dotcom crash, so prices were still sky high. While searching desperately for the new place, we were also going through our three year state certification review, which is a two day intense ordeal that takes months to prepare for.

During this same time, I lost my oldest sister to breast cancer, and my family had to move my mother to an assisted living home for her increasingly severe dementia. Then, miraculously, and with just a few months left before the school would be forced to camp out God knows where or close, we found the church in Santa Clara in May of 2001 and moved that June, surprising all of us as to how resilient our students were.

We were at first very grateful to have found the place in Santa Clara, but as the economy crashed for the first time in the decade, we began looking for a more suitable space and found that at our current site, the old Cory Elementary school in the San Jose Unified School district. Here, we have much more room (although there is never enough!), and we've been able to expand our program offerings to include on site trainings and workshop opportunities.

Back to the beginning of the decade, after we found the church site, it was blatantly obvious that in our position as long time service providers for people with autism, we had the opportunity to take the leadership role in educating the greater community in understanding autism and offering information about effective interventions both medical and educational. The numbers of people being diagnosed with autism continued to rise and very few organizations had our longtime perspective of how to work best with these people. So, with our ongoing collaboration with Santa Clara University, 2010 will mark our 9th Annual Autism Conference. We have provided six to eight workshops/lectures each year, in-services to public schools, consultations to schools both public and private, parent support and information, teacher practicum support, pediatric rotations of residents from Lucile Packard Children's Hospital, in addition to the direct consultations we have with San Jose Unified School District and Santa Cruz County Office of Education. We have affected thousands of families through the expansion of our services.

So, while the economy flounders once again, and the state and federal government remain dysfunctional and paralyzed, we have no choice but to hope for better times in 2010! It can't possibly get much worse.

The Holidays with Autism

Holidays are the time we want to be with our families, even when it involves the trials of travel, traffic delays, and of course, the turkey. (If people really love turkey so much, why don't we eat it more often? I think maybe its symbolic of the holidays - if we did it any more often, we'd likely kill one another). And yet..... everyone loves the holidays, right? Stress and the holidays seem to go hand in hand and it all seems to be about this idea of getting together with our families. Why is that? What is it about our families that make us slightly (or maybe totally) crazy? Maybe its because we tend to anticipate how others may behave or what may be said, and if that expectation materializes, it can activate long held-in-check emotions. Or maybe its just because too much emphasis is put on the idea of everyone in the same place at the same time - and being happy while doing it.

But what is this ostensibly Norman Rockwell scene like for families with children with autism? When families congregate, typically the adults expect to have time catching up on all the goings on since the last visit and the children are expected to have fun playing because, it is assumed, all children love to play. But that's not likely to happen when there is a child with autism around. No doubt, some adult will have to watch the child carefully. And that usually means being in a separate room by themselves watching "Thomas the Train" or other favorite that will keep the child occupied and not running through the house disturbing all those others who want to be together. How fun is that?? Not exactly in the spirit of the holidays and sharing!

Love and acceptance of any person has to mean being happy with them the way they are, not the way we wish them to be. And maybe that's the problem for all of us when the holidays come around. We want our relatives to be the picture of contented 'normalcy' and to be kind, generous, and accommodating of all our foibles. Shouldn't that be true also for families with kids with autism? Don't they belong somewhere in that picture? Since we know in advance that the holidays won't be as perfect as they are hyped up to be, perhaps we should re-think having fun on intense family days, such as Thanksgiving. Maybe renting a jump house for all the kids would make more sense than trying to make the kids with autism be something they aren't.

our 40th anniversary

Well, we did it. With a lot of help from a lot of wonderful people, we managed to throw a pretty spectacular shindig at the stunning San Jose City Hall last Saturday night. With visits from a host of VIPs, including our very own Mayor Chuck Reed, and many families and old friends of Morgan Autism Center, the night was indeed special. The art work of the students was, as always, unique and intriguing, and some, magnificent, but the highlight of the evening( for me anyway) was when one of our adult clients, Wanda, and her older sister, Renay, came up to speak. Renay very briefly spoke of how her single mom, Donna, and family of five girls was constantly perplexed by her youngest sister's strange and confusing behavior. When Wanda was five, her mother consulted a psychologist for advice and was told to take her home and let her 'play in the mud.' Not exactly helpful. She found a program for Wanda, but Wanda quickly regressed, until the school asked her mother to keep her home. About that time, Wanda's speech therapist told Wanda's mom that she had seen a new program that looked like it was designed for Wanda. So, Wanda started at Morgan Autism Center when she was 7 years old. Her mother always has said that once she started at MAC, Wanda seemed to feel like 'there was a place in the world for her'. And their family has been very grateful for all the years Wanda has been with us, helping her understand and navigate a very confusing world.

While Renay was speaking at our gala, Wanda stood next to her, beaming and thoroughly enjoying being the under the spotlight. As soon as Renay finished, Wanda asked if she could speak. She took the microphone and with a strong voice told everyone how much she enjoyed the evening and being at Morgan Autism Center. She was so unexpectedly spontaneous it was wonderful to hear, unrehearsed and unpolished, but herself. And that was perfect and a perfect tribute to the many years of the Morgan Autism Center.

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.

Autism Epidemic/Flu Pandemic?

In a study released this week by the Department of Developmental Services, the number of children  with autism served by the California Regional Centers from 1987 to 2007 increased from 2,701 to 34,656, a 1200% increase. The state's general population increased by only 27 % during that same time span. Not all children with autism are being served by the Regional Centers, so these numbers are understated.

Compare the recent response of the CDC and local public health agencies to the swine flu and the possibility of a worldwide pandemic to the complacency of the autism epidemic news. Because autism in individuals unfolds relatively slowly over the first year of life, for some reason, there does not seem to be same urgency or sense of emergency that we get from the possibility of a flu pandemic.  But why is that? Is it because autism is a chronic condition? 

According to the Autism Society of America, autism costs are about $90 billion each year. Shouldn't this be as compelling as any flu epidemic, effecting so many fewer people?

autism and genius - how 'neurotypicals' can benefit

Its not often you find an article espousing the virtues of having aspects of autism- and furthermore suggesting an understanding of autism might be utilized to release 'flashes of genius' in those of us who are 'neurotypical'. Yet that is exactly what I discovered while reading the latest edition of The Economist (April, 18 -24th) in the article "Genius Locus". In a study published last week by Dr. Patricia Howlin in the Philosophical Transactions of the Royal Society, Dr. Howlin addresses this idea. Because one of the characteristics of people with autism is their restricted, repetitive interests and activities, they can have savant-like skills in certain areas. Dr. Howlin suggests that these obsessional interests and repetitive behaviors allow them to practice excessively the particular skill of their interest, thus sometimes attaining  superior ability. So, to follow that logic, if one practiced  mathematical puzzles or a musical instrument for hours each day, one could conceivably achieve expertise such as might be seen in an individual with autism. There is much more to the article than genius and savants and well worth exploring further. Check it out!

What to do when the school bus stops coming at 22 years

What options do families have for their adult children with autism after they turn twenty-two? Support services for adults with autism are few and far between, if they exist in some places at all - so scarce, that school districts are usually very little help in offering guidance to parents of what to expect for their child. Will the student be able to work independently, through supported living, or need an adult day program? And what are the housing options, - besides very limited?

Consider that autism is a lifelong disorder requiring careful treatment specific to people with ASD.  And that the wave of people with autism about to age out of the California school system is only a few short years away. What to do? I think we may have a problem here! 

As this is Autism Awareness month, it is increasingly important to remember that autism doesn't go away after 'early intervention', which has been the focus of attention in recent years. Although most children do get better over the course of their lives with intense services, the autism remains, however it may manifest itself. I was very heartened to learn of a senate bill introduced by Senators Durbin (D-Il) Casey (D-PA ), and Menendez (D-NJ): the Autism Treatment and Acceleration Act 2009 (ATAA) http://www.autism-society.org/site/news2?page=NewsArticle&id=13301.  ATAA would create many services for adults with autism- vocational, employment, housing and transportation to name a few. This is something for all of us to get behind!

Autism Awareness Day

Today is worldwide Autism Awareness Day, and perhaps a time to reflect on how far we have come in understanding autism - and how far we have yet to go. There is so much we need to know to understand why there is such an increase in the incidence of autism. And so much planning to be done as the crest of the wave of young people with autism ages out of the school systems and still require services. 

This month, the April edition of the  magazine "The Advocate" of the Autism Society of America focuses on the lives and perspectives of people with ASD. One article "Accepting and Valuing Difference" deals with the mundane activities that are rarely mundane for persons with autism, work, families, and what is referred to as the "culture of autism."   The authors state that their hope is to offer information that might help the greater community to discover new ways to "integrate the information and perspectives we offer into their daily life and work, with the common purpose of building bridges of understanding across all segments of our autism community."

Because so many more people with autism are mainstreamed and/or participating in many more ways in their communities, it is incredibly worthwhile to hear from those who write of their own experiences with ASD. We all have much to learn as we try to be more inclusive of our differences, because in many ways, this will be how we, as a community, will best manage the huge numbers of people with autism.

Life, death, and autism

Last month, two of our adult clients lost their parents. Joey's lovely mom died after a long decline, and Vanessa's very kind step-father also passed away. Both were elderly, and while their passing was not unexpected, it is still sad and gives us pause. It  brings to mind a constant, consuming thought always present for parents of people with  autism - worries about their inevitable death and what will become of their child when the parent dies. Who will care for them? And more specifically, who will care for them the way the parents do? Will others delight in their peculiar proclivities or will they find them frustrating? Will their unique interests and obsessions be allowed or will they be considered too narrow, irritating, and therefore something to be changed or eliminated? 

Because of the many behavioral challenges of people with autism, (which family members are accustomed to and usually know how to get around) parents worry about how accommodating others will be when their kids do something that might be annoying, let alone destructive. Will others still find that darling little boy cute after he has poured laundry soap all over the living room couch? What about the young woman who will absolutely refuse to leave her home without her backpack of special items regardless of where she is going or if you are in a hurry? Or the man who screams frightfully whenever someone coughs? What about the woman who wants to photograph every activity in which she participates, taking up considerable time, while insisting people pose in seemingly unending combinations? Will people still be nice to them, even when understandably exasperated by these behaviors?

Joey, who is in his mid-forties, still lives at home, as his parents decided to take care of him as long as they were able. So even as his elderly mother required more and more care, Joey was always at school, neatly dressed, with his lunch made, and ready for the day. Vanessa's parents decided to place her in a group home several years ago. Many of our parents of our adult clients have their children still living with them, and the decision to place their child even when there is no other option, can be heart wrenching. The agony parents go through is excruciating to witness. But even with a group home placement, parents and families are still very involved in the daily activities and general welfare of their children. That will never end  - and neither will the worry.

Vitamin D and Autism

With the dramatic increase in the incidence of autism over the last twenty or so years, there is always much speculation as to causative factors. While researchers focus on genetics and the biomedical causes, others look to the environment for triggers on a genetically vulnerable child. But so many toxic agents have been added to our world in the last few decades, it would seem amazing to be able to single out any one thing as to account for the rise in autism numbers. Nevertheless, this does not slow down the many theories that float about possible causes.

A more recent theory has been the connection between vitamin D, the recommendation for sun avoidance and autism. In the latest quarterly publication of the Autism Research Institute (ARI), there is an article on rainy weather climates and their connection to the autism increase ("Autism prevalence and precipitation rates in California, Oregon, and Washington Counties," Archives of Pediatric and Adolescent Medicine.) The researchers postulate several reasons for the autism prevalence, among them the lack of outdoor play due to inclement weather and thus, a lack of exposure to vitamin D. ARI is currently funding research to investigate the link between autism and vitamin D.

In a review article of the Alternative Medicine Review,Volume 13, Number 1, 2008, the authors John J. Cannell, MD and Bruce W. Hollis, PhD discuss the significance of vitamin D deficiency as being implicated in "most diseases of civilization." Drs. Cannell and Hollis speculate that the current childhood epidemics of autism, asthma and type 1 diabetes, all of which have increased after sun avoidance became conventional wisdom, might be the unfortunate consequence of gestational or early childhood vitamin deficiencies. It would stand to reason, then, that an increase in sun exposure and/or the intake of vitamin D in a supplement form could have significant implications in the treatment of autism. But that seems to oversimplify the disorder. And many parents have tried increasing the use of vitamin D with their children without dramatic results. Perhaps there is a 'window of opportunity' that once lost, is lost forever. The jury is still out on this one, but certainly, it is worth exploring.

another vaccine case

It seems the jury may still be out on vaccines, as far as many people in the autism world feel. And just when it appeared to be definitively decided that vaccines are not the causation culprit by the federal "Vaccine Court" in Washington on February 12, there is a new report on the Huffington Post about yet another case of the MMR vaccine causing an autism spectrum disorder, PDD-NOS. http://www.huffungtonpost.com/robert-f-kennedy-ir-and-david-kirby/vaccine-court-autism-deba b 169673.html

This is such an emotional debate and not likely to be settled by the "special masters of the court" in Washington. But it does seem that we have to look beyond vaccines to the other possible toxins and infectious agents in our environment that effect all of us, and cause such serious problems for the most susceptible of us. There are so many possibilities and not enough research being done or oversight on the federal level to determine the negative impact of being exposed to such a wide range of toxins. Think about all the antibiotics, anti-depressants, blood pressure drugs, etc. that are being prescribed, consumed, and eliminated into the system that provides our drinking water. Then there are the phalates in plastics, the toxic waste of the computer industry, air pollution and God knows what else. We all need to get serious about searching for the causes of autism because the increase in incidence is growing astronomically and affects the resources of every community.

Fever/Heat: Decrease in Autism Symptoms

At the recent Stanford University Autism Conference, Dr. Andrew Zimmerman from the Kennedy Krieger Institute spoke about fever, immune factors and synaptic function in autism. Most interesting was the validation of reports I've heard over the years from many parents of children with autism who say that their children do indeed show signs of improvement with illness. Many report better eye contact, cognition, language, social interaction while their child's autistic behaviors, ("stimming", hyperactivity) are reduced. And according to Dr. Zimmerman, some of these improvements can be seen with the application of external heat, such as hot tubs or time in a sauna. No wonder we have so many families whose children spend so much time in the family hot tub or bath! Not only does it seem to have a calming effect, but it may, in fact, help manage their behavior and improve communication. There are lots of stories out there about fevers: check out http://www.npr.org/templates/story/story.php?storyld=16956039.

Genetics vs. Environment

Although there likely is a genetic pre-disposition to autism, it seems that the environment plays a very important, and possibly critical role - maybe even the proverbial straw that breaks the camel's back. Because so much research has focused on genetic links, we may be missing the myriad of toxins to which children with autism are exposed and the harm they cause. With this in mind, I was very excited to see the recent release from the UC Davis MIND Institute talking about shifting the direction of research from the study of genes to environmental causes, http://www.medicalnewstoday.com/articles/134717.php. The bad news: the numbers of children receiving the diagnosis continues to rise, not to be explained away by better diagnosis or how they are counted.

The Relevance of the Here and Now

What is there to celebrate these days? Can things get any worse? Wait, don't answer that! It seems that anxiety is palpable all around us. You don't have to go very far to be inundated with bad news. We seem surrounded by information and most of it frightening and dreadful. With the California budget in its current mess , we are feeling the pinch of declining dollars from the school districts and regional centers, our main funding sources. Add to that the worst recession in years causing a reduction in philanthropy in these perilous economic times and you have a confluence of factors that cause us all to wait anxiously for the other shoe to drop. What next, we wonder?

In spite of the gloomy climate we are all experiencing, I am reminded that those of us who work at the Morgan Autism Center are in so many ways, very lucky. We are surrounded by children and adults who, though challenged by autism, are not worried by the many anxieties that dog the rest of us. What will happen in the future is not something that concerns them. 401K in the tank? Not to worry! They live in the present, and focus on their immediate needs and interests. They are the ultimate Zen people, living in the moment and experiencing it fully. They are natural practitioners of "mindfulness" without any effort!

For years in one of our classrooms there was an old broken wall clock with a handwritten note that said, "There is no time like the present." It remained for years and always made me smile when I saw it. But beyond the humor of the timeless clock is the profound sense that there is, indeed, no time like the here and now, and no matter how big the picture of which we all are a part, our reality is about getting through each day, one step at a time. So, while we work with our students on the many aspects necessary to facilitate living their lives fully, they are providing us with invaluable lessons as they teach us about what is really important. And this is what makes us so lucky to be in their presence. Somehow, they remind us that life it too short to worry about that over which we have no control. We must relish each moment and prioritize our lives, as we move on together, one foot in front of the other, one day at a time.

So, what is there to celebrate? Its all the little things, the small accomplishments and successes, the smiles and simple delights that make us realize there is, indeed, much to celebrate.

Reflections on Autism

Morgan Autism Center is celebrating its 40th Anniversary this year. In preparation for some events we will be having to highlight this occasion, I recently came across old classroom photographs from my early years at the Morgan Autism Center. I began working at Morgan Autism Center in 1977.   Many of the pictures are of students that are presently clients in our Adult Program.  The pictures brought back memories, serving as a reminder of how far we all have come.

Through the experiences of our students and adults, we have had the opportunity to see first hand how they deal with the many transitions and passages one goes through in life.  Though amplified in persons with disabilities, and especially those with autism, these issues are really the same as those we all have.  We've observed how they deal with puberty, transitions from adolescence to early adulthood, moves into group homes or supported living, menopause, family illnesses and the loss of a parent.  These are momentous occasions in any life, but certainly more challenging in persons with autism, where change and transition are particularly difficult.

Parents often ask, What will happen to my child?  What can I expect?"  As with any child's future, there are no absolute certainties.  Nonetheless, parents need a sense of what may occur, what services are available and who will monitor their child's needs as they age.  The needs of the individual and the family change over time, and vary in response to the level of the child's disabilities.

The advantage of offering lifespan services here at Morgan Autism Center has given us a unique perspective into the world of autism.  We have seen our students and adults respond well to our positive structured environment and have been able to help most families through the difficult times. Being able to share in these life experiences over a long span of time has given us a rare insight, for which we feel most fortunate.

More funding problems

As I am writing this, the State legislature is looking at what was originally a 14 billion deficit for the state that quickly escalated to 40 billion. Naturally, the legislature is looking to cut spending and, like any typically difficult budget year, people with developmental disabilities are right there at the top of the cut list. It always seems such an easy target. But, as is the case with special education, in the long run spending cuts only cost taxpayers more – and usually much more than paying up front. The people requiring special services don’t disappear, and without the necessary support, their problems compound. So, does anyone win in a situation like this? I think not. While we hear lots of discussion of reforming the budget system and eliminating the structural problems inherent in the way State funding is done, we seem unable to make any serious changes until the state coffers are under the gun – and then, education, and especially special education, seems to get a bull’s eye painted on it. With the entire state, and even the country in such dire economic straits, we recipients of public funding all have to buckle our seat belts and hang on for what looks to be a wild ride!

Autism Funding

With the economy in the tank, our investments evaporating, and the state budget deficit growing larger by the minute, our world seems to be in pretty dire straights right now. As recipients of state funding through our contracts with school districts and the Regional Centers, we at Morgan Autism Center feel in a particularly precarious situation. Programs and services for people with Developmental Disabilities are frequently viewed as an easy target for reductions in spending, and are certainly not a priority in the hierarchy of funding. So we are feeling more than a bit vulnerable as we carefully tiptoe our way through this fiscal minefield. As of today, no one seems to know how the state will reconcile its budgetary mess and what will be the ramifications for agencies and schools that rely on government funding. So, like everyone else, we are doing some belt tightening and eliminating anything that seems superfluous – though we never have much of that, even in better times!

In the meantime, and in spite of these challenges, we are continuing to work to provide our students and collaborative partners with the best services possible. A few things going on at MAC:
1) A new program with the Community School of Arts and Music, with the first phase an art class at the CSMA site in Mt. View. Our students look forward to both the art and the train ride to class. The second phase, a music class, started this winter and takes place here on our site.
2) A new collaborative effort with Kaiser Permanente in San Jose on our very successful conference, along with our continuing work with Santa Clara University.
3) A new partnership with Santa Cruz County Office of Education, working with their staff to develop their preschool classes and increase the capacity of their staff to implement effective teaching interventions with the SCCOE students.
4) A new relationship with the Santa Clara County school districts to provide workshops for both special education and regular education staff on understanding the learning style of people with autism.
5) A continuation of the reverse mainstreaming with several local schools: St, Martin’s, St. Nicholas, Harker School and Sacred Heart of the Nativity. This helps foster typical socialization opportunities for many of our students and provide the visiting students a chance to forge friendships.
6) Ongoing commitment with SJUSD to facilitate their autism classes from preschool to 5th grade, and offer assistance in program development through their Autism Advisory Committee.

So, while the rest of the world swirls around us, we’re keeping our noses to the grindstone and doing what we do best – provide our students with the most opportunities for success and share our ideas to help others do the same!