Autism Rate Triples and Research is SLOW!

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?

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

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

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

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!