Morgan Autism Center

Moving Into a Group Home, Episode 2

2012-01-30T11:46:00.000-08:00

Two weeks ago, one of our adult clients, Jane, made a hastily arranged move into a group home. Jane and her mother had been experiencing more than their typical problems and Jane's mom finally realized she couldn't do this anymore. At the same time, the staff in our program had noticed a deterioration in Jane's behavior, reminiscent of a previous time when her medication dosages were part of the problem. Jane was supposed to be responsible for taking her daily medication, but occasionally would either refuse or forget. When this same set of behaviors occurred previously, Jane had to be hospitalized to achieve stability with her meds. Now that she has been placed in a group home, her medication is being monitored closely. As a result, Jane is back to her normal quirky self and seemingly, very happy. And she announces each day that she loves her group home. Hopefully, its not just the honeymoon period!

I'm old enough to remember the days of the 'snake pit' institutions that housed people with developmental disabilities and mental illness, often all lumped into the same categories and therefore sharing the same space, however inappropriate and inadequate. I remember visiting a state hospital while still in college in the early seventies and being horrified by what I saw. So, I certainly understand the reluctance of some of our parents who also remember those miserable days and are determined never to place their beloved child in such a situation. Fortunately, I believe things have changed for the better. People are living more within communities and being given the opportunity to participate more in the activities that their families and friends do.

So, what I've noted about the students/clients who have been placed in group homes over the last 10 years is a positive shift. Those students who have been placed have done surprisingly well. One of our students was so rigid that even going into a different classroom was a major undertaking on the part of the staff to prepare him. So, when his relatively young father died, his family decided they had to place him. I could hardly imagine it happening without hearing about it on the 5 o'clock news. But to my surprise, it went incredibly smoothly. And that has been the story in general with group home placements of late. Because the group home staff have time to focus on the clients, the clients are often able to do many more things than they were able to as part of a family. By this I mean that any family life is ever changing where the brother's or sister's piano lessons, soccer practice, tutoring, mom or dad's late meeting are often emblematic of the constant change. A fairly predictable daily schedule is the norm for the group home. And frequently, the group homes are able to take trips to places like Disneyland, snow trips, and always Las Vegas, though that one escapes me.

The other notable fact is that the clients tend to lose weight, but in a good way. Their food intake is monitored carefully, they never seem to feel deprived, and their level of exercise and physical activity increases. They can't sneak into the pantry when mom's on the phone or distracted in some other way.

Once a child is placed in the group home, parents of course continue to be very much a part of their lives and spend time with their child - usually as much as they want. Many of our students go home for weekends or join their parent for dinner several times a week. We have a parent who comes once a week to join her son for lunch here at school and often on weekends, the family has him at home. While initially, he didn't understand why his mom was leaving, he has come to accept the routine and the two of them have some lovely moments together.

No question, making a decision to place a child is monumental for any family and I'm certainly not advocating group home placements over home. But it is with some relief that I can report my observations that most group homes are run very well and the people running them seem to genuinely care for the clients. So, when that day comes, parents can have a sense that a placement is not abandonment - it is an inevitable passage and better to be a part of the decision and know the choices than to have to make a decision too quickly.

Moving to a Group Home

2012-01-13T12:40:00.000-08:00

Clearly one of the most agonizing decisions a parent has to make is when and how to place their child with autism (or any other significant disability). This morning, we got a call from a distressed single parent, overwhelmed by the needs of her adult daughter, Jane. Over the years, Jane's mom has carefully explored the options for her daughter, but even in very difficult times, still decided to keep her daughter at home. Like so many other parents, she has concerns about her daughter's safety. She also knows no one will care for Jane in the same way she does. Who will talk with Jane when she is in a bad mood and not get frustrated with her? Who will help Jane get through her sometimes difficult behavioral periods that can last days at a time? Will her new caretakers enjoy Jane's quirky humor and delight in her simple pleasures? This is the stuff of nightmares for many parents!

Earlier this year, one of our older clients (43 years) was placed in a group home by his widowed mom, again after long and careful consideration on her part. Always anxious in the best of times, Hank was undone by the thought of change. As he is always quite verbal and worried about any change, Hank would say heartrending things like "my mother doesn't love me anymore" or "I'll never see her again." Needless to say, this didn't help his distraught mother one bit, as she already had tremendous guilt in placing him. So, it took much reassurance to both parent and child that both would survive. And we had to assure the mom we would carefully monitor Hank's demeanor, dress, food - all those things that might indicate any issues. She had many tearful calls to us after placing him, and at times, vacillated. But when provided support for her decision and assurance that our watchful eyes would keep track of how things were for Hank, both he and his mom have settled into a contented acceptance of their situations.

But back to Jane and her mom. Although not the ideal way to make such a big decision, Jane's mom was feeling particularly desperate this morning, and called her long time social worker as well as our staff, and said it had to happen today. She and her daughter had come to a point where living together was beyond what the mom could do. Amazingly enough, the social worker knew of an opening in an appropriate home, and arranged for Jane to go there today. Jane's mom is bringing her things tot he group home and one of our directors particularly close to Jane has accompanied Jane to this new place. At first when Jane heard about this, she was delighted, mostly because she knew she would get to see a golden retriever of the social worker, which she loves. But the dog won't be staying at the house, so that is when we will have an idea if this will just be for the weekend or beyond. Not an easy day for either Jane or her mom, and not going to be an easy weekend.

A New Year's Resolution...2012

2012-01-01T10:48:00.000-08:00

Watching TV, internet or reading the newspapers, we are bombarded with 2011 lists, based on whomever's opinions; 10 best/worst movies, 50 most significant events, 75 topics most discussed, etc. Just who are these people anyway who make up these lists, and why should we assume their opinions are ours? But more importantly, what do these lists have to do with real people? I suppose it makes us reflect somewhat on what occupied our minds over the last year, but let's face it, its all hindsight now. And unless it makes us change our direction to not repeat mistakes, its probably better left in the past.

So, let's concentrate on moving forward. But rather than making resolutions to be forgotten in two weeks, let's take a lesson from a child with autism and learn to live in the moment. If we would practice the zen-like mindfulness of these people, we would appreciate our surroundings, smile more, give more compliments, be better focused and therefore work better, improve our sleep, minimize stress - so many upsides! Maybe even reduce wrinkles and gray hair - I'm liking this more by the minute!

Okay, so basically I'm talking about thinking positively and being present in the here and now. It sounds so easy, but we all know it will take effort, maybe significant effort, but so worthwhile. That's my hope for 2012. Happy New Year!

Learning by Doing

2011-12-02T13:37:00.001-08:00

"To 'learn from experience' is to make a backward and forward connection between what we do to things and what we enjoy or suffer from things in consequence. Under such conditions, doing becomes a trying; an experiment with the world to find out what it is like; the undergoing becomes instruction--discovery of the connection of things." John Dewey wrote those words about education way back in 1916 and they are still very relevant today. And even more so regarding the learning process of autistic persons. While rote learning is important in autism to master routines, it is also important to recognize that people with autism need to learn by actually doing things - making things, exploring things, and capitalizing on their passions and curiosity to figure out how the world works.

The mystery of how learning actually occurs is the subject of many education policies, but as John Dewey noted in the last century, we really understand things best and retain that information when we actually experience those things. Simply put, we learn by doing. The more real experiences we can help our students have, the better their understanding of their environment. They may not be able to explain the how and why, but that doesn't mean they don't get it. Hands on activities are critical to learning - from facilitating play with 3 dimensional characters, figuring out how to put simple and complex puzzles together, building with Legos to building complicated machines. You just can't learn to ride a bike by learning the word b-i--k-e or watching a video - you've got to get on one and get going.

So many of our students give us a road map for their learning style through their 'restricted interests and activities,' which is part of their diagnosis. Perhaps if we look at 'restricted interests and activities' and change those works to something different - passion, focus and action oriented - we'd have a better idea of how to approach their teaching. It is all in the way we choose to frame it.

Last week, a friend introduced me via the internet to a 14 year old named Joey who has been involved in Detroit's Maker Faire for kids on the spectrum who enjoy making things. Joey writes his own blog (http://lookwhatjoeysmaking.blogspot.com/) and while the spelling is not perfect, the enthusiasm is clear and his creations are very imaginative. How wonderful is it to have an outlet for all that creative energy! And how obvious is it that Joey has mastered many concepts via his creations. My guess is that Joey is one of those kids who learn by doing things and figures out the how and why of things through his experience. With kids on the spectrum, most concepts are better understood with the actual practice rather than a drill at a desk. And we already know that most information truly take in is visual. So less talk about the whys and the wherefores and more focus on doing!

Thoughts on Thanksgiving

2011-11-23T11:45:00.001-08:00

Notwithstanding the difficulties that families have living with autism, there are still many positive things we all learn from being around autism. Probably the one thing I find the most valuable is the Zen concept of living in the moment. The world around us may be falling apart, our budgets may be cut to the bone and discord among our politicians reigns, but that doesn't bother kids with autism. What do they care about all that and indeed, why would they? They are much more concerned with the present and what is right in front of them. They make us all practice "mindfulness", and teach us that we should focus our senses on what we are experiencing in the here and now rather than thinking ahead and anticipating trouble. I often wish that when I wake up in the middle of the night ruminating about all the things that keep me up I could have the presence of mind to simply breathe deeply and listen to the darkness. Occasionally, I remember to try to be in the moment and relax, but typically my mind is racing.

So, this morning in our staff meeting, it was particularly delightful to hear from our teachers about the things going on in their classrooms. One teacher told us of her excitement that some of her students are improving their abilities with AAC devices. On her last field trip, one of her students told her via his device to slow down and the other told her to get on the freeway! (She assures us she was going the speed limit!). Another teacher talked of the Thanksgiving luncheon that has become a tradition here. This teacher started the lunch a few years ago, inviting other classrooms to participate and families as well. Each year, more people join. So nice to give families the opportunity to join us and be with their children in a safe and fun environment. So, as I write, the students, staff and families are arriving to share the meal that many have prepared, including the students. These are all little things but how nice to hear about the simple things that make our days so wonderful. Next time I wake up at 3 am I will try to remember these simple things and embrace the day with the enthusiasm of our students. I have a lot to be thankful for, not the least of which is the ability to be part of this great program and part of the lives of such wonderful people. Happy Thanksgiving to everyone!

Adolescence and Autism - Don't Stop Teaching!

2011-11-18T14:29:00.001-08:00

People with autism may go through many differentdevelopmental stages in their lifetimes, probably the most dramatic beingadolescence. Puberty is typically evident in our autistic kids a year or twobefore there are any physical signs, and then, most unfairly, lasts much longerthan it seems to linger with typically developing students. Very few peoplerecall those mostly middle and early high school years with nostalgia, so justimagine the chaos the hormones inflict on kids with autism. But there is somegood news for those families in the throes of adolescence. If we can get theirkids safely through the teen years without too much upheaval, they typicallyarrive on the other side of adolescence calmer and more relaxed.

Another phenomenon we’ve seen is that during puberty theirlearning seems to plateau or at least, not progress as it did in earlier years.That is when schools mistakenly want to limit educational offerings to onlyfunctional work to match their apparent halt in acquiring information. But Ithink it is important to recognize that this ‘hiatus’ from learning is likely onlytemporary. While we clearly need to emphasize the acquisition of functionalskills and work on independence, we should keep in mind that as they exitpuberty, people with autism will typically go through another uptick in theirability to learn new things. At least, that has been our observation, with allthe students we have seen move from childhood to adulthood. Puberty grindseverything to a crawl while emotional and behavioral problems become paramountand then, they begin to get back to where they left off in their pre-teenprogress.

So, it remains important to continue to present informationto these students, even if it seems futile or useless, for we never know whenthat window of opportunity to take in information might open up again. To thatend, I feel that it is important to continue to explore academics and presentscience and math and encourage opportunities to read. The students need tocontinue to be challenged and engaged in activities as they move intoadulthood. We all need to keep our brains stimulated and open for learning, andpeople with autism are no different. Who knows what we may discover?

Mysterious but Exceptional Abilities with Autism

2011-11-09T11:04:00.000-08:00

How is it that somepeople with autism can have some truly extraordinary abilities and indicateexceptional intelligence in certain areas, and yet require so much assistancein daily activities? This is one of the conundrums of autism: the ability toexcel in specific skills, but the practical application of these very same skillsis another story. Our students who are verbal offer us some glimpses into theirunique world and cognitive processes. But we also have a program full ofchildren and young adults, many of whom have unique traits and remarkabletalents who are non-verbal with significant communication difficulties. We cangenerally ascertain their language receptive skills by how they respond to us,but gauging what or how much they truly understand remains an enigma. This wehave to guess through those fleeting moments when it is as though the fog liftsand there is clarity. Even with technology and AAC devices, the initiation ofcommunication is typically the hold up.

We have long known that many of our non-verbal studentscan learn to read, not phonetically, but through their strong visual memory andperception skills. And the acquisition of math skills can be equally mysteriouswith some of our students. While we struggle to teach one-to-one correspondenceor other math concepts, we shouldn’t overlook the fact that the student maywell be beyond us in understanding concepts. But how to get that information outand make it useful is our difficulty to surmount. It doesn’t particularly seemto bother our students that we don’t know what exactly they really do know.

A recent articlepublished in Nature by Dr. Laurent Mottron at theUniversity of Montreal's Centre for Excellence in Pervasive DevelopmentDisorders notes that many autistics have qualities and abilities that aresuperior, but he doesn’t necessarily refer to them as ‘savants’ as so manyothers do. Dr. Mottron’s research team was searching to establish the superiorabilities of autistics in multiple cognitive operations such as reasoning and perception.He analyzed a group of autistic people, one of whom, Michelle Dawson, was able todescribe her thinking process, which was obviously very helpful to the research.Michelle Dawson's interpretation of autistic strengths is that they are indicativeof authentic intelligence rather than a serendipitous trick of the brain thatallows persons with autism to mindlessly perform intelligent tasks. Dr. Mottronsuggests that among the many reasons people with autism have been assumed tohave mental retardation is the administration of inappropriate tests and themisinterpretation of autistic strengths. While some people with autismevidently do have limited cognitive abilities, just how limited they really areis not at all clear.

So, if its not a fluke or trick, how do we capture thatknowledge and help our students make it useful? Perhaps instead of focusing onthings people with autism don’t seem to know, we should instead be helping tocreate more opportunities to demonstrate what they do know or are capable of.And this may be the advantage of newer technologies. We have computers, AAC devices,and iPads with some wonderful programs that can illustrate a conceptual levelof understanding that no pencil and paper assessment can mimick. For the mostpart, our whole focus on programs and devices is to foster communication, whichobviously is important. But we shouldn’t sacrifice the opportunity to exploretheir other abilities and knowledge, however obscure. Then, the next critical stepwould be to figure out how to access that learning in a way that would befunctional and constructive. In my opinion, that’s where the next research shouldbe heading.

Teaching without Words

2011-10-21T08:01:00.001-07:00

Since we know that people with autism don't process auditory information well, why is it that we persist in presenting concepts by explaining with words? Even written information is difficult for persons on the spectrum who may be hyperlexic, but have limited comprehension or reasoning abilities. Let's face it, for some people words just complicate things. And for the rest of us, we spend half our lives trying to figure out what was meant by someone else's words. Miscommunications abound in all interactions. Start thinking about the upcoming holidays, and most of us anticipate complications with family communications. It is all about words, inflection, symbolism and intentions.

So, maybe we should concentrate more on how this applies to our teaching. With so much new technology available, this is the time to take advantage of computers, iPads, AAC devices and use more visuals rather than words. In our Morgan Autism Center Model, we remind staff in our trainings to use visual schedules, pictures, illustrate what you want the student to understand. A repetition of what you just said to your student does not mean comprehension. Visually presenting the concept is typically the best way to achieve understanding.

I recently heard about a study at the UCDavis MIND Institute about teaching math without words. This is particularly exciting for educators to be able to access software designed for this very purpose. I am sure there are many other innovations out there just waiting to be discovered, so we need to explore and see what works best. Check out this post: http://www.youtube.com/watch?v=7odhYT8yzUM.

The M.A.C. Conference

2011-10-07T11:41:00.000-07:00

October 1 marked the 10^th anniversary of the Morgan Autism Center’s Annual Autism conference. And what a conference it was! The last 10 years have been a culmination of information on the latest medical and educational interventions, highlighting specific programs that have gained prominence to help educate people on their merits or shortfalls. To that end, the concentration has been primarily on early intervention and building social awareness. These are still topics well worth investigating, but while we are looking for ways to refine our interventions, the children are growing up. What to do then?

This year’s conference was full of excitement and energy, as our focus was on the transition years. After all the discreet trials, social skills training, and focus on eye contact of the early years, what skills are really important to help our students navigate the world? We had four very informative presentations; from Stephen Shore, talking about the Hidden Curriculum and its applications on participating in the community; Peter Gerhardt, presenting a very energetic view on how to get autistic people with serious behavior problems into the community successfully; James Ball, on the broader uses of ABA with adolescents and adults in expanding their behavioral repertoire; and Jamie Marshall, talking about how the very wonderful Boston Higashi School works with the transition age, through the development of specific routines and much physical activity.

These four were full of information on how to circumvent the difficulties of adolescence and the adult years. The common theme was to get those students out into the community as much as possible and help them experience to the best of their ability all the things we all like to do – use public transportation, go to restaurants, movies, shopping, etc. Practicing in a classroom just doesn’t cut it when the real world beckons us to do more.

To fill us in on the latest in medical interventions, we had Dr. Glen Elliott from Children’s Health Council. As usual, he presented clearly and specifically the choices of doctors in medicating people with autism, pointing out the pros and cons of each medication group and why some work better than others.

Then to explain Special Needs Trusts was Ellen Cookman from Gilfix and LaPoll, providing information so necessary for planning the future of people with disabilities.

And finally, Danielle Samson and Shannon Des Roches Rosa talked about the iPad and its application in the classroom and in the community. Theirs was a very app specific talk, which is exactly what parents and teachers want to know about. They also focused on the need to facilitate the use of apps with kids with autism, as the kids can very quickly thwart the underlying assumptions of the app and make it into just another stimming toy, thus loosing its learning potential.

All in all, a great day and we look forward to our next conference in 2012!

The 10th Annual Autism Conference is Coming- and Why You Should be There!

2011-09-25T10:39:00.000-07:00

Morgan Autism Center's 10th Annual Autism Conference is next Saturday, October 1 at Santa Clara University. Why should this matter to you? This is the most eagerly anticipated annual conference about autism in the Bay Area. If autism touches your life in any way, here are several reasons:

1) Stephen Shore - Stephen is autistic, and is able to describe with great clarity his journey from being diagnosed at four years old through graduate school and obtaining his doctorate, as well as getting married. To hear descriptions of our chaotic world seen from the perspective of a person with autism reveals much to those of us who are not autistic, but know that the world is challenging enough to the most 'normal' among us.

2) Peter Gerhart - Peter has been working with people with autism for over 30 years and has focused on adolescents and young adults, a much overlooked population. Much of the focus in the autism world in recent years has been on early intervention, but as we all know, not everyone is mainstreamed after intense early intervention. So, what does happen and what should we do to prepare for all these children who will inevitably grow up? Come hear Peter's eloquent and reasonable suggestions and interventions.

3) Jim Ball - a behaviorist in the field and author of "Early Intervention & Autism: Real Life Questions and Real Life Answers". He is also on the board of the Autism Society, and focuses on behavior, social skills, technology and trauma.

4) Shannon Des Roches Rosa and Danielle Sampson - both experts in the world of iPads and their application to people with autism. Shannon and her son Leo (who has autism) have demonstrated the power of utilizing the iPad with facilitated direction. Danielle has conducted numerous very popular workshops since the iPad came out, focusing on her expertise as a Speech Pathologist.

5) Glen Elliot, M.D. - talks inlay terms about the latest research on medications for people with autism and the when and why they should or should not be used. Glen's expertise is always sought out and he is always very willing to answer questions.

6) Jamie Marshall - Jamie will be speaking about the wonderful Boston Higashi School and their "Daily Life Therapy". The school has a unique way to capitalize on our routine oriented students and through routines and patterns teach them to function as best they can in the classroom, social and community settings.

7) Ellen Cookman, Esq. from Gilfix and LaPoll - this is always an informative presentation on how best to marshall resources for the future of a child with disabilities.

So, reason enough to attend. It is promising to be a beautiful day in Santa Clara, and we will have exhibitors and lunchtime entertainment provided by the "DreamWeavers" - a group of talented young people with autism who will delight all who hear them. See you there!

Autism and iPads

2011-09-12T11:29:00.000-07:00

A year and a half after the launching of the first iPad, excitement still exists for this amazing device. As more and more apps become available, it is difficult to keep up. Many people with disabilities are discovering its many uses to facilitate communication. For people with autism, iPads can be dramatic in their application. They are easy to intuit, simple to navigate, and have beautiful graphics. And so compelling that they can be either a very effective reinforcement - or a huge distraction. Precisely because they are so easily accessible, it is critical to create times to use the iPad as a teaching tool and other opportunities to allow the person with autism uninterrupted access to explore. And the difference needs to be clearly delineated.

Shannon Des Roches Rosa and Danielle Samson are among two iPad experts featured at the Morgan Autism Center conference coming up on October 1 at Santa Clara University, Santa Clara, California. Both offer specifics on utilizing the iPad in practical ways to facilitate play and learning. Because it is such a new tool being used in ways it wasn't originally designed to be, it is worthwhile to get some advice from the experts. Shannon is also the co-author of "The Thinking Person's Guide to Autism" and has an ongoing blog with notes about iPads at http://www.squidalicious.com/p/on-ipads.html. Danielle is a long time speech therapist who has been very active in the Augmentative Alternative Communication world. Both are worth checking out.

Our favorite four legged friend is gone!

2011-08-28T14:27:00.000-07:00

Last Friday was our last day with Kona, the wonderful golden retriever who has been a daily participant at the Morgan Autism Center for 15 years. To the very end, Kona faithfully provided our students with a sweet disposition and calming presence. Kona had a unique communication between herself and the students that can only be described as magical. Our nonverbal students were able to interact with her in ways they often were unable to do with others and Kona somehow always understood their intentions. Through Kona we were able to elicit more language from many of our students as well as to teach social skills. Occasionally, Kona's presence would be called upon to enable a student to maintain an emotional equilibrium if having a tough day. Kona would always come through for us.

Kona's owner was our Director of Student Services, Judi Campbell, who generously allowed Kona to be part of our program. Many of the students and clients came down to the office daily to see Kona, and often Kona would join them for walks. Judi spent a great deal of time, especially in the early years, facilitating Kona's relationships with the students. Kona seemed to understand the limitations of the students from the very beginning and was always accommodating in ways that could teach us all to learn how to better interact with one another. Kona taught students who were initially frightened of all dogs how to be in the same proximity safely, no easy feat! While she was playful and lively at times, (for, after all, she was a dog!) she never pushed her boundaries when the students were around. Kona was a great motivator for many of our students: to encourage them to exercise a bit more, to get to spend time with Kona after doing special jobs, or to have the opportunity to play catch with Kona and her toy. Kona loved to play with her favorite toy, which she would toss into the air, and dance around the courtyard proudly carrying it with her head held high to balance it across her nose.

Dogs are delightful companions, but Kona was even more. She was a devoted friend to our students, staff, parents, and visitors. Of course, Judi was the center of her universe and we are very grateful to Judi for having shared in the delight that was Kona. We will all miss her but what a gift to have known such a wonderful animal.

Back to school!

2011-08-23T12:18:00.000-07:00

Our staff have been here these last few days and weeks busily cleaning, making materials, schedules, calling families all in preparation for the return of our students tomorrow morning. Its back to school! With some moves among our staff to work with different children in new classrooms, there is an infusion of excitement and energy. And though we've only been gone for 3 weeks, for some of the parents, its been a LONG time - much longer than the calendar indicates! A few have stopped by in the last couple of days and mentioned their not-so-silent anxious anticipation for the school year to get started.

I think most schools and their teachers look at the beginning of the school year the way the rest of the world looks at New Year's. We set goals, make resolutions, expect improvement and plan, plan, plan! We are determined to work harder to get it right and aim for what's best. We look forward to the coming year with new ideas, better ways to achieve our goals, and excitement of re-connecting with our students and meeting the new ones.

The rooms have been scrubbed, things tossed or re-arranged and organized, staff have been briefed, files read, parents called, buses lined up - and I think we're ready!

Autism and the Law

2011-08-14T16:10:00.000-07:00

While recently on vacation, I had two people save me articles written about people with High Functioning Autism or Asperger's syndrome. Both involved serious problems with the law. But the conflict in both situations was very similar - were the accommodations required for these people to function pushing the boundaries of what is acceptable and therefore above the law? They raise the question of how our society should respond to the growing number of adults with autism and whether enough is being done to accommodate their behaviors - or is too much being accommodated and therefore excusing what would typically be unacceptable ?

Here are the situations:

Simon is 25 years old, graduated from high school, an obsessive sports fan, who becomes very upset when his favorite teams lose, or when he misperceives a social situation with his neighbors and feels slighted. So, he screams and rants outdoors, sometimes in the middle of the night, from 10 minutes up to an hour. After many years, his family's neighbors, while trying to be understanding and sympathetic, have had enough. They have had to call the police to stop Simon from screaming and yelling and he often directs his rants to specific neighbors, not always the same ones. After responding to between 50 - 100 calls, the police and the neighbors finally felt something had to be done. The police began assessing "nuisance" fees to the family to prod them into a more permanent intervention. This nuisance ordinance had not been set up for such a situation, but it turned out to be a "tool of last resort to remedy a difficult, sometimes agonizing standoff between the family and their neighbors, " according to Peter Krouse, who reported on this in the Plain Dealer ( Sunday, August 14, 2011). The family was charged more than $6,500 because of their son's outbursts, which they fought in a bitter battle in an appeals court.

Of course, the family feels wronged and dismayed over the perceived lack of understanding on the part of the neighbors. However, the neighbors were people who had known this boy since he was young, and all expressed compassion and sympathy for the family. But enough was enough.

The solution the family settled on was to send their son away to Utah to live with other people with disabilities. The neighbors felt that without a punitive consequence (the assessment fee) for their son's actions, the family would bring their son back home and he would continue with his pattern of disruption.

From what I could glean from the article, Simon's night time rants could be very direct towards specific neighbors, screaming about why they wouldn't let him come into their house to take pictures or why they wouldn't invite him to visit. The targeted neighbors felt unnerved by his yelling and knew they couldn't reason with Simon. The parents felt they had tried everything, from taking away favorite activities to confiscating his cell phone. But as anyone who knows autism knows, logical consequences are lost on a person with autism. In fact, they likely will only increase the agitation and compulsiveness of the autistic person, thus aggravating the situation even further. So, the police would be called and that would put an end to his rant.

My take is that the call to the police became part of this young man's routine and that was what would finally bring closure to his rantings. The inability to understand logical consequences has to be the most frustrating thing about dealing with a person with autism. If you don't understand the why and the wherefore of a situation, and you have a very compelling need to follow a routine regardless of the consequences, you are destined to repeat the same mistakes over and over again. The only successful intervention is to provide the person with an alternative response that achieves something close to the goal they are trying to reach. And the alternative will need to be practiced over and over. When that fails, it is usually most effective to remove the person to a completely different situation and carefully monitor them so the old behavior won't begin again, thus enabling them to develop a new and positive and adaptive behavior pattern. By moving their son to Utah, I would hope the parents were able to achieve this. But should they bring him back to his family home, they would have to either expect that he would revert to his old behaviors, or if given very careful and thorough supports maybe he could overcome his compulsion to scream at the neighbors. Clearly, there are no easy solutions.

The second situation is more complex. In this case, the man with autism is much more sophisticated. As reported by David Kushner in IEEE Spectrum (a magazine for technical insiders, not about people on the spectrum) the U.S. Government wants to prosecute Gary McKinnon for hacking into classified government information. Gary is obsessed with UFOs and was convinced the government was hiding alien antigravity devices and other technologies. He wanted to release the information to help all humanity. In Britain, where Gary is from, the case has transformed him into a cause celebre. Why? Because Gary has Asperger's Syndrome. As Rhea Paul of the Yale School of Medicine Child Study Center states in the article, "There have been an inordinate number of young men with Asperger's who have gotten in trouble with the law. Its difficult for them to intuit moral decisions that may come more easily to others." And that is where the difficulty lies. What is the role of Asperger's in his crime? And is it a crime if he has Asperger's?

Many of Gary's supporters in Britain have rallied outside of Parliament with picket signs, created "Free Gary" T-shirts, websites, and all the usual fanfare for issues deemed to need publicity. Even the former Prime Minister, Gordon Brown has weighed in saying Gary deserves sympathy.

Sympathy maybe, but does that excuse what potentially could have been a dangerous consequence? Does Asperger's become the new insanity defense? And what about someone with bipolar disorder or schizophrenia? Many people with Asperger's have the cognitive abilities to plan and carry out criminal behavior, of that there is no doubt. But because of their limited social abilities and understanding the gravity of the consequences, should they get a pass or a more lenient sentence? Provocative thoughts and certainly requiring greater awareness of the potential for trouble. I expect we will hear much more about this issue in the future.

The Geek Syndrome and Autism Talk TV

2011-07-20T08:29:00.000-07:00

Recently, I discovered a great series called "Autism Talk TV" on the website "Wrong Planet", a name that I love! One of the producers, who calls himself an "Aspergian" is the son of John Elder Robinson, the author of the book "Look Me in the Eye", about his struggle with Asperger's while growing up. Just recently, he has a new book called "be different" (starting with lower case letters in the title!). John's son, Jack Robinson, and his co-producer Alex, along with others do a series of interviews with people in the field of autism. The episode of "Autism Talk TV" that really intrigued me was an interview with Steve Silberman, the author of "The Geek Syndrome" published 10 years ago for Wired Magazine. http://www.wrongplanet.net/postt133968.html.

It was that article that inspired the theme of our first autism conference, also 10 years ago. It has sparked many lively conversations and even arguments about the genesis of autism. When teaching the autism seminar for Santa Clara University and even a recent seminar at Stanford University, I always referenced that article for its clarity in describing what has become a widespread, though unproven theory. But regardless of the theory, it still has relevance years later, intriguing and thought-provoking.

Steve Silberman was our keynote speaker at our first conference. Amazingly enough, our autism conference was one of the first in the bay area, and certainly the first to focus on the increase in incidence in both Silicon Valley and California. Steve spoke eloquently about his journey into the world of autism, which was accidental. (He describes why he became fascinated with autism in the aforementioned interview). Also speaking at that conference were Jon Shestack, one of the co-founders of what was then Cure Autism Now (now Autism Speaks), Rick Rollens, parent advocate, and Dr. Robert Hendren of the newly founded UC Davis MIND Institute.

As we are planning for our 10th Annual Autism Conference, again at Santa Clara University, the incidence of autism continues to increase and though there is much research going on, not much has happened to clarify what the causes may be, let alone a clear definition of what the constellation of symptoms, which are so different among people with autism, actually may mean. The wheels of research turn excruciatingly slowly!

In the meantime, quirky people are here to stay and walk among us, so we all have to figure out how to live together in ways that benefit everyone.

Genes and the environment

2011-07-05T14:59:00.000-07:00

Two new studies whose findings have just been released have shed more culpability on environmental factors especially during pregnancy, and combined with the assumption of a genetic predisposition. As noted this morning in the New York Times, the environment, including the prenatal development period may be as important as the genes in causing autism. This seems quite logical, for certainly our genes cannot be changing as quickly as the rate of autism is increasing. (http://www.nytimes.com/2011/07/05/health/research/05autism.html?_r=1&emc=eta1)

In the study of twins, both fraternal and identical, it has been found that the rate of autism occurring in siblings is much lower than the rate found in twins. The suggestion is that it is the conditions the twins shared in the womb, rather than what happened after birth that contributed to their autism.

In the second study, mothers who had taken certain anti-depressants had an increased risk of their child developing autism. This follows a recent study from Epidemiologist Rebecca Schmidt of the UC Davis MIND Institute released in May on the use of prenatal vitamins. In this case, mothers who took prenatal vitamins or the vitamins during the first month of pregnancy were only half as likely to have a child with autism as those who didn't. If the mother waited until the second month of pregnancy, there was no effect.

Is this going to make parents feel like they are being blamed once again? Parents don't need suggestions of their possible complicity in causing the autism of their child, so the more clear information that can be ascertained, the better.

To the Dads

2011-06-19T08:29:00.000-07:00

When referring to parents of children with autism, we typically are referring to the moms and how it is they manage to orchestrate family life, amidst the unpredictability of autism. But this is a salute to the dads, who are equally bewildered and stunned on first receiving their child's diagnosis. Like the moms, they have to figure out how to navigate this new world they didn't expect to be in. Their challenges in dealing with this information are different than the mothers, by the very nature of the differences between men and women. Some are paralyzed and don't know which way to move, and others immediately seek solutions and google interventions and research. As their children develop, it is remarkable to see how these fathers come to terms with their child's disability.

It has been my observation over the years to see a change in fathers. Thirty years ago, the child rearing was still very much the purview of the mother; managing the school schedule, the dietary requirements, doctors' visits, etc. And, what seemed to me, a reluctance or perhaps a lack of understanding on the part of the dads to accept the disability for its apparent limitations. But that appears very differently now in the dads I meet. While it certainly can't be an easy life, there is much more humor and acceptance of the personalities and peculiarities of the children. I don't know if its just my imagination, but it seems that dads have in some way been granted permission to enjoy their children more and the situations they find themselves in. I suppose that's the only good thing to come from the increase in the incidence of autism - more people are aware of it, recognize it, and are slightly less likely to be quite so judgemental - that is still ever present.

So, here's to the dads - to Jim, who enjoys joking with son Jeffrey and have worked out some funny little routines; to Sean, who laughingly came to school to collect the computer son Jack took to school while he got Jack's backpack; to the group of moms and dads who took their kids to family camp this weekend; to David, a single dad who revels in the accomplishments of his son Jonathan in the music group, the "Magic Makers"; to Joe, another single dad whose daughter Krysten is moving on to a new adult program; to Jim, father to Matthew and Jonny, whose adoration for his kids is palpable; to Christopher, who takes his Jonny everywhere and delights in his compatability. Okay, the list is too long. To all the dads, who may be baffled and harried, but who fight and advocate for the best their child can have. They may not show it obviously, but it is clear these children love their dads and I'm sure they know well their dads love them.

The Death of a Loved One

2011-06-01T07:19:00.000-07:00

Joey's dad died a few weeks ago. He was 92. Joey's mom had died several years ago, leaving Joe Sr. to look after Joey. The youngest of five children, Joey had lived with his parents all his life. His older brother moved in with Joey and his increasingly frail dad to help out over a year ago. The family had never intended Joey to be placed in a group home, despite the fact that Joey is not always the easiest person to care for. Even though Joey was (and still is) constantly taking and stuffing things into his pockets - papers, old napkins, tennis balls etc.; compulsive about many activities and determined to do things his own way; and even occasionally would lock his parents in their bedroom, his parents nonetheless delighted in him.

Joey has a nice singing voice and loves to harmonize. He enjoys all kinds of music, from opera to rock and roll, and sings the melodies lustily, without knowing any specific words. A while ago our talented IT staff and one man orchestra, Jim, brought his guitar and Joey down to my office. Jim wanted me to hear Joey sing the Elvis song "Are You Lonesome Tonight?" Knowing this would be a treat, I recorded it on my iphone, downloaded it on my computer, and occasionally will listen to it just for the joy and simplicity of Joey's singing. He has the rhythm perfectly down, the melody exact, the inflection and approximation of words, and the pathos spot on. Where Elvis would embellish the music by speaking, Joey again approximates the sounds, pausing precisely as Elvis would. One would assume Joey wouldn't know of what he is singing. But how can he get it so right? Joey certainly understands something of the song's context and is very able to translate that to the listener.

Joey's parents were very proud of his musical talents. They loved to hear Joey sing and made sure he had access to many different styles of music. They laughed and cherished his many peculiar and compulsive behaviors, though many surely must have compromised their lives. Joey must wonder, where are they now, these two people who loved him so deeply? While he seems to be adjusting well - his brother makes sure his lunches are the same, his longtime caretaker, Hector is still involved, and home life is the usual routine, we want to watch carefully to help Joey for those inevitable times he will realize something is missing in his life. Everyone experiences grief differently, and people with autism are no exception. It may manifest itself in some unusual way, but I believe it is in their hearts somewhere. Maybe Joey will connect with his parents through his songs. I'd like to think that when he sings, they would be listening.

Autism Study cites higher autism estimates: 1 in 38

2011-05-10T11:24:00.000-07:00

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

2011-05-06T16:44:00.000-07:00

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!

2011-04-11T11:00:00.000-07:00

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

2011-03-21T19:29:00.000-07:00

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

2011-03-06T12:25:00.001-08:00

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!

2011-02-18T09:11:00.000-08:00

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

2011-02-14T09:47:00.000-08:00

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!

2011-02-05T13:57:00.000-08:00

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?

2011-01-30T12:51:00.000-08:00

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

2011-01-20T14:07:00.000-08:00

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

2011-01-01T15:23:00.000-08:00

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!

A Visit from Santa

2010-12-17T09:56:00.000-08:00

Yesterday, we had our annual visit from our most wonderful Santa. With his jingling bells and long white beard, our Santa (for the last 25 or so years) delighted all our students and adults with gifts carefully thought out for each of them. It is a day when we all indulge in magical thinking, for who does not want to believe that Santa really exists? Scott, one of our adult clients, thanked Santa for his present, and then innocently, but sincerely asked Santa "how are your reindeer doing?" And Jonny was so clearly elated when he saw he had received drum sticks! However did Santa know that?? Claire couldn't believe that Santa actually was aware of her love of all things to do with Sesame Street, and before she returned to her seat, she had to know that he would be at her house next week. Santa assured her he would, and all was well.

Happy Holidays to everyone!

Lunch with Friends

2010-12-10T11:12:00.000-08:00

This last Wednesday, I had three of our long time adult clients over to my house for what has become our annual holiday luncheon. All three had started at Morgan Autism Center as small children and have been with us all these years. Now all are entering middle age. Also invited were four former teachers, Margie, Pat, Maureen and Jim, all of whom had worked at MAC when I first started 34 years ago. The teachers have kept in touch with me and with the students and about 5 years ago I had decided ( with prodding from Wanda and Jeff, two of the three adult clients) to invite everyone to my house for a reunion. Little did I know that this would become a holiday tradition! Jeff helps suggest the menu (usually the day after the previous luncheon) and Wanda and Chuck keep me on track to make sure I contact everyone and sometimes help me make the initial phone calls.

But what fun it was to see our old friends and talk of old times. Fortunately, Chuck has a phenomenal memory and could tell us the dates certain events happened (such as a date in the 80s that coincided with Jim's car breaking down as he was driving Chuck to the bowling alley) and Wanda and Jeff joined in with their memories. It was heartwarming to see how these adult clients, all with autism have grown up and matured. And how clearly they have formed strong emotional bonds with those of us who have worked with them and known them for so long.

All three of these adults had very challenging behaviors as children and adolescents, and even early adulthood. Two did not speak until they were 4 or 5, and all had major meltdowns when they didn't understand what was going on or were frustrated. So, to see them greeting with pleasure and hugs their longtime friends was most gratifying. How many of us keep up our friendships with others for so many years? I know just how lucky I am to have all these people in my life and cherish the opportunities to spend time with them. And, as has happened each year immediately following our lunch, I heard suggestions from Jeff today as to what we should have on the menu for next year!

Music for Autism

2010-11-19T13:13:00.000-08:00

The quote "music speaks what cannot be expressed, soothes the mind and gives it rest, heals the heart and makes it whole, flows from heaven to the soul," really resonates when watching how music can make people with autism respond. We all know that babies can be soothed by hearing their mom's lullabies. And who doesn't sing in the car or listen to music to calm oneself after a difficult or emotional day? It is an easy, immediate and unconscious way of losing oneself in the tunes and rhythms, and hopefully, emerging in a better frame of mind.

For students with autism, it is clear that music is one of the most efficient and satisfying ways to connect. Rhythm and melodies are a perfect way to share a moment and increase joint attention - a constant goal. But best of all, it makes all of us happy. And happy people are more inclined to be willing to participate in their environment. This is certainly an ongoing objective for autistic people, as well!

Through a very generous grant from the Escher Family Foundation, we have been able to offer all our students and adults several hours a week with a very talented and energetic music therapist. Each class and our adult program have been able to participate in this offering, and we are loving this amazing opportunity. We have been able to purchase some instruments to practice rhythm. Some of our students are just beginning to explore actually playing instruments and we are all curious as to where this will lead. In addition to this experience here on our campus, we also have had the benefit of a grant from the Goldman Foundation to attend music and art classes at the Community School of Music and Arts in Mt. View. There, we are having a great time learning how to play marimbas as well as singing.

For all of us, art and music should be priorities instead of an afterthought. What cannot be expressed in words can be expressed through music. And this is especially true of people with autism. You only have to see the differences in their smiles and their increased engagement to know that music truly does speak to the soul!

"Autism's First Child"

2010-10-23T11:45:00.000-07:00

Recently, the Atlantic Monthly published an article called "Autism's First Child" by John Donvan and Caren Zucker. It is the story of Donald Triplett, age 77, the first child the renowned Dr. Leo Kanner would come to observe. Dr. Kanner, after weeks of watching Donald, began to realize that nothing in the psychiatric literature gave him any clue as to what was the reason for Donald's unusual behaviors. After working with another 10 children very similar to Donald, he finally published the now classic paper outlining the symptoms of autism. Kanner described the 11 children as having a basic inability to relate to others, failure to use language to convey meaning, and a desire to maintain 'sameness'. The children demonstrated anxiety, and all were described as having very specific and intense interests in certain objects or topics. He described how they indulged in repetitive, sometimes self destructive behaviors and preferred to be alone. Kanner noted the sometimes very good cognitive abilities, excellent memory for details and visual spatial skills, and often precocious literacy. Amazingly, Kanner also felt the condition was congenital, distinguished it from schizophrenia and noted that half of the children had unusually large head circumferences. Also, he noted some familial similarities. Some parents were very detail oriented, and some parents and siblings had experienced language delays and symptoms of autism themselves. Ear infections were noted, as were the unusual appetite and eating patterns.

Kanner, in 1943, described many of the features necessary for the diagnosis today, but very quickly, the psychiatric climate changed. With Dr. Bruno Bettleheim came the idea of "refrigerator mothers" - mothers and fathers who in their hearts, really wished their children with autism were dead. That theory was essentially debunked in the late 60s, but psychoanalysis still was insistent that these children required "play therapy" to help them renounce their anger. And many people still viewed autism as an emotional problem well into the 90s.

Imagine where we would be if all the research that has gone into autism, albeit mostly in the last few years, had started in 1943. All the descriptive information noted by Dr. Kanner would have put us ahead by light years from where we are now. Check out Donald's story - it gives one hope!

file:///var/folders/5u/5u3MjyWvEnGjLP+jlOENlk+++TQ/-Tmp-/com.apple.mail.drag/The%20Atlantic%20Monthly--Autism%20Article.pdf

Visiting the Boston Higashi School

2010-10-08T10:19:00.000-07:00

Last week, I was lucky enough to have been invited to visit the Boston Higashi school. The staff there were extremely generous with their time and allowed me to observe their classes for most of the day, talk with them about their life therapy program, and share information about the Morgan Autism Center. It was very difficult to conceal my considerable envy at their facilities - 55 beautiful acres just outside of Boston. I left downtown Boston in rush hour traffic and returned in late afternoon rush hour. Each way was only about 30 minutes. Unbelievable!

The most rewarding aspect of my visit though was as I was sharing our philosophy with their staff and we realized we have a very common belief in how people with autism should be educated and appreciated. Although our programs are quite different, there is much we can learn from one another. Certainly, we know that physical activity is beneficial for all of us, but the Higashi school incorporates it completely into their curriculum. I saw all the students jogging the mile around their campus in the morning, doing dance and physical games throughout the day. That was wonderful, and clearly invigorating! Then there is the music and art that are also part of the curriculum and not considered extra. And we know that students with autism, with their significant communication difficulties, need alternative ways to express themselves. Art, music, and dance are another outlet for their creativity. The music program at the Higashi school is infused throughout the day. The jazz group I heard play at the end of the day was positively exhilarating! What talent and what fun they were having.

We are looking forward to more opportunities to collaborate with the Higashi school, and we expect them to present at our 2011 fall conference. It would be wonderful for more people to understand their program and be inspired by their model of treating the whole person.

Autism - the Canary in the Mine?

2010-09-28T17:10:00.000-07:00

Morgan Autism Center has successfully put our 9th Annual Autism Conference to rest, but so many thought provoking presentations have kept my mind spinning. Most significantly was Dr. Martha Herbert's presentation. Dr. Herbert has re-framed autism to think of it not as a genetically determined hard-wired disorder, but more in terms of it being a chronic condition with the possibility of altering its course. Her title was "Autism: a brain disorder or a disorder that affects the brain?" Dr. Herbert presented autism as a systems disorder, where genetics and environment play intricately together and which view allows for more investigation into the many physiological problems people with autism have. Most importantly, it may indicate that some features of this systems dysfunction may be treatable, which is certainly promising.

At the same time, Dr. Herbert noted the phenomenal increase in toxins in our environment and the concurrent rise in other health issues, such as asthma or diabetes. On Monday, on a plane to Boston, I sat next to a toxicologist whose own 11 year old son has severe allergies, another increasingly common ailment these days. And his reaction is life threatening if he is exposed or touches a myriad of things to which he is allergic - wheat, soy, casein and all nuts. When I was growing up, peanut better sandwiches were an everyday staple for most school kids. Not any more.

Dr. Herbert's presentation was encouraging and frightening - and profound. When was the last time you saw a speaker at a conference given a standing ovation? Her clarity and deep understanding of what we are all facing with our exposure to so many elements was breath-taking. As she said, perhaps the greater numbers of children with autism are like the canary in the coal mine - a harbinger of what will befall all of us if we don't wake up and do something about the environment.

Having a Voice Output Device is One Thing - Using it, Another!

2010-09-20T11:31:00.000-07:00

Trying to get the students with autism to move beyond requesting is immensely difficult. Just ask any speech therapist or indeed, a parent of a child with autism - (always the best expert!) Asking questions, commenting, participating in a conversation are constant goals for our students, and yet remain elusive - usually due to lack of initiation or motivation of the student. But we sometimes forget that for them to make comments or ask questions, they must know more than nouns, for which we usually have a plethora of icons available. Verbs are very hard to teach. Descriptors even harder. And so we try to incorporate these within their augmentative communication systems, low tech picture schedules, communication books and devices. Again, the devices and communication books are only as good as the information loaded onto them. And the student must be trained to use the device and understand that the voice output will gain him the things he needs or wants. But just as important is the student's communication partner who must also be trained in the use of the device. And trained well enough that he/she can model asking questions and conversing. These devices can be intimidating. But modeling how a conversation takes place naturally is critical to enable the student to get a sense of the back and forth involved. So training is a must!

Over the last 2 years, we have been working with our speech therapists and AAC specialist to get our staff beyond the icons and communication books and up to speed in the use of devices. We use the Vantage, the Springboard, Say-It-Sam, Chatpc, GoTalk and now iPads. In each case, the staff have to understand how the device functions, and carefully monitor the student's use to minimize stimming or just random playing. We know that our students will happily fiddle with any electronic gadget and we also know that when they are fiddling, they are not processing information. So, all time with the devices must be structured to optimize the potential communications. Its an ongoing challenge, but worth every minute as we see our students beginning to grasp the idea of real communication.

iPads arrived for our students with autism!

2010-09-10T10:52:00.000-07:00

This week, we got our iPads for each classroom, and what excitement they have generated! In a brief in-service for our teachers and SLPs by our veteran Speech and Language consultant, the staff learned about the basics - getting started, volume control, etc., and then we got to scroll through apps of all kinds. Each teacher and speech therapist spent a good deal of time pouring over the incredible variety of apps, and getting increasingly excited while discovering just a few of the obviously many possibilities available on the iPad.

Now, we've had the iPads in the classrooms for a few days and clearly, they are already having an impact on our ability to expand our presentations and language options. The students are immediately drawn to them, but we are maintaining control so they will be used for educational and language development purposes. That doesn't mean they aren't very fun, though - for kids and staff alike!

Autism Conference and iPads

2010-09-01T13:18:00.000-07:00

The Morgan Autism Center is very excited to be hosting our 9th Annual Autism Conference on Saturday, September 25. Once again, our co-hosts will be Santa Clara University and Children's Health Council. We have a terrific line up of speakers. In addition to a very illustrious group of presenters, we are particularly excited by our very own Danielle Samson, our long time Speech and Language therapist, who will be doing one of several presentations on using the iPad with students with autism. Since it was launched back in April, the iPad has been proving to be a very intriguing and compelling tool with our students with autism. Seeing the many apps that were almost immediately coming out and related to autism, we applied for and received a very generous grant from the Escher Family Foundation, which has allowed us to purchase iPads for every classroom. We are very excited as we are all learning about ways to use the iPads with our students.

Also presenting at our conference will be Dr. Martha Herbert from Harvard, speaking about her research which views autism as a systemic disorder affecting multiple organs, including the brain. Focusing on nutrition with people with autism, will be Elizabeth Strickland, who spoke in the bay area several years ago to great acclaim. Locally, we have Dr. Cheryl Klaiman, from the Children's Health Council talking about how to overcome "face blindness". From UCSF, we have Dr. Barbara Kalmanson presenting "Floortime". Dr. Kalmanson is undoubtably the bay area's most esteemed expert on this technique. Stephanie Madrigal from the Social Thinking Clinic in San Jose (with Michelle Garcia Winner) will be speaking on Social Learning. So, many topics of interest to people who work with or live with persons with autism. You can register by going to our website www.morgancenter.org.

i-devices

2010-04-28T14:43:00.000-07:00

With all the excitement surrounding Apple's launching of the iPad, it could have been easy to miss the obvious application of this technology for people with disabilities - especially autism. Many people with autism have some very sophisticated, but cumbersome devices that have a voice output. In addition to their unwieldiness, they are phenomenally expensive. this gives much pause to any parent or school district to move forward to purchase such a device. And knowing the chances of the device getting tossed, dropped, dipped would only make one hesitate more. To be sure, it is all of these factors that make the devices so heavy in the first place. They are very sturdy. But at $8,000, wouldn't it be worth exploring the much less expensive iPad, with its simple interface and (for this month of Autism Awareness) free apps to download created for people with autism.

If the sophistication put into the development of the devices designed by speech therapists with the complete understanding of language, the iPad would be incredibly useful to so many people.

Autism Awareness Month

2010-04-01T14:09:00.000-07:00

April is Autism Awareness Month, and a time to think about how far we've come since the days of Bruno Bettleheim, and yet how far we have to go. The more people know, the more we will increase acceptance and inclusiveness of these people within our communities, which would be a boon to all of us.

At Morgan Autism Center, we are creating more awareness through collaborations with other entities. On April 17th, we are joining forces with Whole Foods in Campbell to promote awareness of healthy living and diet. Whole Foods offers 'food tours' for people interested in the Gluten-Free, Casein Free Diet. And on April 28th, we are combining our efforts with Montalvo Arts Center to showcase a special screening of the film Possibilities, Disabilities and the Arts, by Keri Bowers. After the film, we will have a performance by Nick Guzman, one of the performers featured in the film, and a panel discussion that I will be moderating. Here is the link: http://montalvoarts.org/events/autism_film/

Antidepressants and autism

2010-02-22T14:42:00.000-08:00

Newsweek magazine recently published a very provocative article on antidepressants based on research in The Journal of the American Medical Association in January - www.newsweek.com/id/232781. That research presented evidence indicating that popular antidepressants are no more effective than a placebo, with the strong suggestion that it is the patient's own expectation of improvement that lifts the depression. The article does state that the antidepressants can be effective in patients with severe depression and it does not advocate that patients stop taking their medications. Naturally, there was a strong response to the Newsweek's article and the media picking up on the simplistic idea that antidepressants are as effective as a sugar pill - and a whole lot less expensive. The Psychiatric Times responded with a lengthy discourse on the Newsweek article and the research itself. www.psychiatrictimes.com/home/content/article/10168/1520550

I thought about the experiences of our students with autism who have been given antidepressants and how a placebo effect would not necessarily be in play. Our students, being on the lower end of the spectrum, typically do not have the self awareness to realize that they may be depressed or an understanding of the purpose of the medications. Since the effectiveness takes weeks to ascertain, it would seem to stand to reason that either the medication works or not - and that is the conundrum I see. What we usually observe in those first six weeks or so of the medication trial, are students much calmer and happier - a time when supposedly we should not be seeing anything. After this initial period, we then see an increase in agitation and anxiety. At that point, there is often an increase in the dosage, which just exaggerates the side effects now being exhibited. While the antidepressant might not alleviate the behavior problems for which it was initially prescribed, there clearly is some kind of effectiveness, at least in the beginning. So something is happening. Perhaps a better reflection on the effectiveness of antidepressants on mood disorders or depression might be to track the response of people with autism, who won't have the distraction of a placebo effect.

Wakefield and the MMR vaccine

2010-02-08T07:08:00.000-08:00

Last week the British General Medical Council (GMC) retracted the Lancet paper by Andrew Wakefield, M.D. that had stated there was a link between the MMR vaccine and autism. http://www.guardian.co.uk/society/2010/jan/28/andrew-wakefield-mmr-vaccine

According to the GMC, Wakefield's research had been done unethically and for profit, and this was the reason for the retraction, NOT vindication of the MMR vaccine. Although vaccines definitely are necessary for the general public health, the intense vaccine schedule infants and toddlers are recommended should be researched much more before assuming all are safe. It seems to defy reason that a one day old infant should receive the Hepatitis B vaccine before leaving the hospital. And the burden of so many vaccines on such immature immune systems must be more carefully calculated. It makes much more sense to me to spread the vaccines out over time, and not load them together. As far as I am concerned, the jury is still out on the culpability of vaccines - perhaps just the overload, if not the vaccines themselves.

Outrageous!!!

2010-01-24T11:33:00.000-08:00

Last week, the U.S. Supreme Court overturned more than half a century of decisions on restricting corporate and union financing of election campaign contributions, essentially opening the floodgates for special interests to pour money into campaigns to persuade officials to vote their way or eliminate those who don't comply. Equating the average citizen's free speech with that of a corporation is almost ludicrous. In fact, when I first heard about this decision, I was on my way to work, and assumed I had misunderstood the radio announcer's words. When I realized I hadn't misunderstood, I can only say I was stunned. Can a corporation vote? Run for public office? No wonder we citizens feel so powerless, and now we will be even more so.

People with disabilities are already at the bottom of the rung in terms of having a voice. Those of us who advocate for their needs know very well that the first services to go are to those to persons with special needs. However will we be able to combat the likes of pharmacy and oil corporations, insurance and union interests? And why will anyone listen to our needs, when we can't offer them tons of money? What kind of a screwed up democracy are we stuck in???

2010-01-18T13:49:00.000-08:00

As I write this, we are looking at a week of incessant rain; stormy, windy, can't-play-outside kind of weather. 'Heads-up, 7-up' doesn't quite cut it when we're trying to entertain a school full of students with autism and other neurological challenges!! But, wait - let's think of this as an opportunity to get creative. We always think we are following the lead of the students as we design our curriculum, but days like the next few really will challenge us to see if this is just our own perception of how we're doing - but is it the reality of what the students experience? If they aren't engaged and having fun while learning, they will quickly let us know. And we must be flexible and ready to shift our gears to make the coming days as stimulating and yet challenging to our students as possible.

So, instead of dreading the coming week, I'm hoping our wonderful team at MAC will rise to the occasion as they usually do and create something wonderful. It should be great fun for everyone!

As Time Goes By.....

2009-12-31T16:54:00.000-08:00

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

2009-11-23T08:34:00.000-08:00

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

2009-11-11T16:14:00.000-08:00

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

2009-10-05T18:55:00.000-07:00

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

2009-09-28T11:37:00.000-07:00

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.

2009-09-13T19:22:00.000-07:00

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

2009-08-24T11:26:00.000-07:00

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

2009-07-26T15:26:00.000-07:00

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

2009-06-14T13:55:00.000-07:00

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...

2009-05-24T16:09:00.000-07:00

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?

2009-05-07T09:53:00.000-07:00

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

2009-04-24T11:26:00.000-07:00

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

2009-04-12T19:16:00.001-07:00

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

2009-04-02T20:08:00.000-07:00

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

2009-03-22T15:56:00.000-07:00

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

2009-03-09T18:13:00.000-07:00

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

2009-02-25T19:22:00.000-08:00

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

2009-02-16T18:21:00.000-08:00

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

2009-02-10T18:59:00.000-08:00

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

2009-02-05T19:14:00.000-08:00

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

2009-01-28T12:03:00.000-08:00

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.

2009-01-27T20:00:00.000-08:00

Autism Funding

2009-01-26T14:33:00.000-08:00

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!