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.