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!

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.