Asperger's Conversations

Autism, Asperger's, and...Surfing

Educational Videographer Larry Loganbill who resides on Kauai sent me today's article from the Honolulu Star Bulletin on world class surfer Clay Marzo who has been diagnosed with Asperger's.  Marzo also works with kids in a free surf camp for kids with autism run by Israel Paskowitz in California called Surfers Healing. 

Marzo's mother's comments are enlightening in terms of the ongoing debate about "who changes?" (the culture or the person with autism):

"He's not capable of conforming," says Clay's mother, Jill Marzo. "He's just capable of being him. And that's the beautiful thing. Nothing bothers him because he's in the moment. For years I tried to change him to fit in, but I've been forced to accept and live in the moment with him."

While we tend to think of people with Asperger's as having "special interests" or abilities outside of those involving physical activity, Marz0's case shows us something different.  His ability to focus intensely on surfing has made him, at age 19, one of the best in the world:

Adam Klevin, the cinematographer for "Just Add Water," notes that while most athletes' skills decline with fatigue, Clay can handle four surf sessions -- up to eight hours -- in a day. "And he never stops going bigger," Klevin says of Clay, who is renowned for his ability to take off late and rack up "an amazing percentage of tube rides." It's an intuitive rather than conscious pursuit, Klevin believes.

In the trailer for a new film about Clay Marzo, Tony Attwood appears saying "You don't suffer from Asperger's...you suffer from other people..."  The problem is not having Asperger's...the problem is 'other people.'"  Tony is on target:  People with ASD's have always made tremendous contributions to the planet, not just in science and the arts, but perhaps even...in surfing!  Here's the trailer for "Just Add Water:"

Asperger's Conversations in Psychology Today: Net Link

Thanks to Robin Dutcher at Keene State College for passing on a net link to Ben Nugent's article, "Field Guide to the Nerd:  It's all Geek to Me" in the August issue of Psychology Today.  Your's truly is quoted, along with others.  The article makes a good case for "geek dignity."

Obama and McCain: Positions on Autism

After listening to the morning spins on NPR today about Obama's convention speech and McCain's VP choice, I wondered where each stood on a matter dear to me:  support for intervention and therapy for children with Autism and Asperger's.  Here is what Obama has to say on his website:

Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families.

And, here is what McCain has to say on his website:

John McCain is very concerned about the rising incidence of autism among America's children and has continually supported research into its causes and treatment. He has heard countless stories about families' hardships obtaining a diagnosis for their children's autism and accessing quality medical treatment. He believes that federal research efforts should support broad approaches to understanding the factors that may play a role in the incidence of autism, including factors in our environment, for both prevention and treatment purposes.

John McCain was proud to lend his support to the Combating Autism Act of 2006, which he cosponsored, and worked to ensure its enactment. This law is helping to increase public awareness and screening of autism spectrum disorder, promote the use of evidence-based interventions, and create autism Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology. John McCain understands that despite the federal and scientific research efforts to date, the exact causes of autism are not yet known and greater research is needed to understand this disorder. That is why in November 2007, he joined with Senator Lieberman in requesting the leadership of the Senate Health, Education, Labor and Pensions Committee, which has jurisdiction over federal research into autism, to hold a hearing on federal research efforts regarding factors affecting incidence and treatment in order to help determine where research efforts can best be directed. As President, John McCain will work to advance federal research into autism, promote early screening, and identify better treatment options, while providing support for children with autism so that they may reach their full potential.

A big problem that I keep hearing about from families and indirectly from news sources is that 1. few insurance companies are compelled to pay for critical early intervention services and 2. Even if they say they will pay, they drag their feet (probably hoping you'll give up).  Obama goes one step further, asking for a "watchdog" group that will make sure that the Private Insurers follow the law and do what they are supposed to do:

National Health Insurance Exchange: The Obama plan will create a National Health Insurance Exchange to help individuals who wish to purchase a private insurance plan. The Exchange will act as a watchdog group and help reform the private insurance market by creating rules and standards for participating insurance plans to ensure fairness and to make individual coverage more affordable and accessible. Insurers would have to issue every applicant a policy, and charge fair and stable premiums that will not depend upon health status. The Exchange will require that all the plans offered are at least as generous as the new public plan and have the same standards for quality and efficiency. The Exchange would evaluate plans and make the differences among the plans, including cost of services, public.

Those of us who have dealt with insurers know about this problem:  Corporate Insurance companies will delay, obfuscate, interpret laws in self-serving ways...anything to avoid paying.  Kudos to Obama for at suggesting a solution...although Ted Kennedy's idea that everyone in the country get a Medicare card makes more sense.

Education vs. Psychotherapy

Tomorrow is the first day of classes at Keene State College and I'm thinking about what I really want for my students.  Here are a couple of big goals:

1. CHANGE- I want my students to be changed by what they learn.  In this sense, the boundaries between therapy and education blur:  We psychologists want our patients/clients to change and We College professors should want our students to change.  I want the ideas covered in class to impact their lives in a meaningful and purposeful way.

2. GLOBAL CITIZENRY- I want my students to be participants in the global world, through blogging, podcasting, contributions to Wiki, and, by studying the connection between culture and clinical psychology.

3. BECOME IDEA MAVENS- I want them to learn to love ideas.  And to collaborate with others in the process of analyzing clinical and social problems and generating new ideas and solutions.  And, to believe that their thoughts and contributions matter.

That's enough for now, isn't it?  Back to preparing for tomorrow's classes.

APA Meeting in Boston: Psychologists Working to End Sad Chapter

I couldn't make it to APA this past week in Boston but was glad to see my old Professor Tony Marsella from U. of Hawaii and others working to end psychologists involvement in military torture and interrogation.

Asperger's Conversations named one of 100 top mental health blogs

I'm not sure what it means to be named "one of 100 top mental health blogs" but special thanks to Kelly Sonora of University Reviews online for alerting me of this.  This might be as good a time as any to reference a piece in the NY Times that mentioned my work in Asperger's in Colleges and universities.

Do You Go With The Data?...Traveller's ills, drugs, empiricism

I continually encourage my students to be good "Personal Scientists" and to question whatever doctors, their friends, news magazines, and so on tell them is the right course of treatment for anything.  "Go to the source" I tell them...read the original data and see if it makes sense (they have a hard time believing that their own doctors or psychologists or news sources may not have done so).  So, when my own Doc prescribed me a fairly new drug for "ahemm"..."travelers' diarrhea caused by noninvasive strains of Escherichia coli" after I returned from 2 days in Mexico City with "ahem...well you know" I happily grabbed the pills.  And after (yes "after") I swallowed the first of about 10 pills (I'm in the middle of treatment right now) to be taken across several days, I decided to check on research for "Xifaxan" (aka rifaximin).  First off, I'm always impressed when the promotional teams at drug companies come up with a name with 2 letter "X's"...remember Xanax (aka alprzolam). 

Here is one set of data from their clinical trial:

Clinical Response in Study 1 (ITT population)

	Rifaximin (n=125)	Placebo (n=129)	Estimate (97.5% Cl)	P-Value
Median TLUS (hours)	32.5	58.6	1.78a (1.26, 2.50)	0.0002
Clinical cure, n (%)	99 (79.2)	78 (60.5)	18.7b (5.3, 32.1)	0.001

a Hazard Ratio
b Difference in rates

So, what's the deal you might ask?  Well, I'm not sure, but as an old colleague, Elmer Streuning, Ph.D. of Columbia University's Clinical Epidemiology Research Center would always remind me, "The data is always interesting."  In the chart above, according to Salix Pharmaceutical, Inc., TLUS refers to "time to last unformed stool."  If interested I would encourage you to read the data and descriptions from Salix's website, but I was intrigued by, for example, the "clinical cure" rates in which, while they point out were significantly greater in the active pill group (about 79%) compared to Placebo (60.5%), I was surprised to see such a high placebo rate.  In other words, nearly 2/3 of the patients were "cured" by a fake pill.   And, according to their TLUS data, placebo patients took about an additional 24 hours to improve.  In defense of me taking the pills (I just swallowed my 6th at noon today), I'd like to get this over with ASAP.  But it is interesting, isn't it, that the placebo response rates are so high (should my Doc have given me a fake pill instead?).

Blogging and Dancing: Global Citizenry

Thanks to my friend Scott Menge in Seattle who sent me this video tonight!  It made me think of all the blogging I've been doing since practically the beginning of blogging when Jon Udell introduced me to it and encouraged me to be the first blogger on my academic topics of interest.  What is the ultimate goal?  To share ideas and co-create new ones...across the planet...to become a global citizen.  So, I blog and podcast, but Matt dances!

Solidarity at APA

Stephen Soldz passed on this announcement about an important gathering for those of us opposed to psychologists' involvement in military interrogations and torture.  My old professor, Tony Marsella, Ph.D., will be among those speaking in protest to the American Psychological Association's continuing (and puzzling) resistence to precluding psychologists involvement with unethical activities at Gauntanemo and elsewhere. 

Here's the core announcement:

Please join us. This is an issue for all concerned citizens, not just psychologists. All are welcome.

Come join Boston Psychologists for an Ethical APA

Rally at the American Psychological Association Annual Convention

Protest Psychologists’ Involvement in Abusive Interrogations and Illegal Detention

Where: Plaza at front entrance of the Boston Convention and Exhibition Center, 415 Summer St., Boston

When: Saturday, August 16^th,  12:00-2:00

Voice your outrage at the APA’s continued acceptance of psychologists’ participation in Bush administration interrogations and detention centers where  human rights and international law are continually violated. “There is no right way to do something wrong.”

Unfortunately I'll be out of town attending a colleague's wedding in L.A., but those of us who signed up early on to withhold our APA dues should consider attending.  And a big Aloha to Tony who will be traveling from my old Ph.D. Alma Mater at the University of Hawaii!