A Visit from Santa

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

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

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"

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!

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Visiting the Boston Higashi School

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?

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!

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!

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

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

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

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

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

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!!!

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???

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!