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!

As Time Goes By.....

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

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

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

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

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

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

The Holidays with Autism

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

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

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

our 40th anniversary

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

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

the mystery of nuance

Last week, one of our adult clients, Wanda, was very distressed because of her confusion about when and where its okay to touch others, particularly giving hugs. Wanda wants desperately to hug people. Because of her inability to distinguish circumstances of when a hug or arm around another is appropriate, she's been told various things to help her, such as its okay on a special occasion or when you see a friend after a long time. But what constitutes a 'special' occasion?Social occasions are an enigma for her, and it is impossible to explain every situation that might occur, because there will always be an exception to the rule. And the problem is not only when you should offer hugs, but to whom? Why shouldn't you hug everyone on Valentine's Day or Halloween? Those days are 'special' to Wanda. And if Christmas is special, why can't she hug everyone in the program, (remembering that for Wanda, everyone literally means everyone. To the point where she would chase staff members into the parking lot if she did not get an opportunity to hug them. Needless to say, that became a bit too much, in addition to being dangerous. Wanda is so single minded, she was unaware of moving cars, being so intent on catching her yet to be hugged person.) So, we had to modify and try to further explain that one. Now, mind you, this is something that Wanda and I - and others - have talked about before, in fact quite extensively over the years. But it still doesn't make sense to her. Understanding the subtlety of social relationships, the nuance of body language is completely baffling to her.

So, when I met with Wanda last week, she was in tears about yet another situation that was frustratingly mysterious. Every new situation requires explanations and general rules because each one is different and Wanda doesn't generalize from one circumstance to another. Yet, she tries very hard to maintain her composure and very good manners and would be mortified and deeply saddened to find out someone was put off by her behavior. So here she was, in a new situation, this time involving the university where she attends a conversation clinic with other clients in our program. Wanda wants to hug the student interns from the university each time she sees them, which is twice a week before and after the sessions. This was becoming an obsession and making the interns uncomfortable. Once again, we had to go through the explanation of why and when and hope that some part will make sense to her. She had many questions about her observations of others, but why and when were those appropriate and her attempts not. To Wanda, it seems so unfair. She agonizes about her own internal conflict of trying to do the 'right' thing with others, while wishing she could freely act on her own compulsions.

I tried to help her understand the difference between friends and family and people who work with her. I explained that I don't hug staff members very often even on special occasions because we all work together and we see one another daily. Did she get it? Her tears slowly subsided as it seemed we made some progress on her understanding and acceptance of what I said. She was able to give me a summary of what we came to after our long chat. But I know better. I know that someone somewhere will break Wanda's understanding of the rules and hug another someone, and for Wanda, it will be another brand new situation.