Left Brain/Right Brain

REMOVE the “How Retarded Are You Quiz” Off Facebook

2009-11-11T22:32:52Z

Believe it or not, there is a application/quiz on Facebook called “How Retarded Are You?”

Luckily there is also a movement to have this removed from Facebook, with the simple mission statement:

Let’s band together and get FB to forbid this ridiculously offensive quiz from being taken by anyone again.

If you are on Facebook, consider signing on to the petition. It’s another step in ending the use of the r-word.

The Special Olympics campaign is separate from this facebook movement, but I thought it worthwhile to include their Public Service Announcement here:

Autism Speaks misleads the public on the IACC’s stance on vaccine research

2009-11-12T02:16:26Z

Autism Speaks recently announced that the Interagency Autism Coordinating Committee (IACC) included vaccine research studies into the objectives of the Strategic Plan. I’m sure many people who read their press release are thinking that the vaccine-autism research will definitely be funded. But, is this accurate? The answer is no.

According to the press release and the Autism Speaks website:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

I’ve already noted that the statement Autism Speaks gave before the IACC was incorrect. Vaccine research was not a “clear directive” of the Combating Autism Act. You can check for yourself.

Alison Singer of the Autism Science Foundation, and member of the IACC, has a statement on the ASF blog, Autism Science Foundation Agrees with Decision to Keep Vaccine Research Out of the IACC Autism Plan.

The ASF blog notes:

Autism Science Foundation President and Interagency Autism Coordinating Committee member Alison Singer joined her colleagues on the IACC in voting to eliminate references in the autism strategic plan that could imply that vaccines cause autism or that call for additional vaccine research. “Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science,” said Singer. In addition, the two research objectives proposed that specifically called for additional vaccine research were not approved.

Also:

Singer added that some groups seem to be misinterpreting the inclusion of the word “vaccines” in the list of examples of immune challenges as a mandate for vaccine research, and have issued misleading statements. “Based on the votes taken yesterday, the IACC was clear in its position about autism and vaccines. But if there is public confusion about this new research objective then I will try to make sure we clarify it at our next meeting,” Singer said. The IACC will continue its work on the plan at a meeting on December 11, 2009 with the goal of finalizing the revised plan by January, 2010.

The entire statement can be read on the Autism Science Foundation’s blog.

It appears that Autism Speaks is placing a fairly major spin on a single action taken by the IACC. Again from the ASF blog:

The IACC also voted unanimously to add a new objective to study whether or not there are certain subpopulations that are more susceptible to environmental exposures such as immune challenges (including naturally occurring infection, vaccines, and/or immune disorders).

Compare that to the Autism Speaks announcement:

IACC Includes Vaccine Research Objective In Strategic Plan For Autism Research
Autism Speaks is Encouraged by New Language Recommending Funding of Vaccine Research

Or, worse yet, the first line of their press release: “Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research”

As I noted above, I am very confident that many people reading the announcement are expecting autism-vaccine research to be funded.

But this isn’t a “vaccine research objective”. This isn’t calling for “vaccine research studies”.

What it is, is an objective that mentions vaccines. It is a very important distinction. Take a close look, the objective does not call specifically for a vaccine project to be funded. It doesn’t even call for immune challenges to be funded. These are just listed as possible examples.

This is a small example of why the IACC needs to be very careful in how and if they discuss vaccines. Groups such as Autism Speaks can act incredibly irresponsibly in spinning any statement including the word vaccines.

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Autism Speaks pushes the “legislative history” myth about the Combating Autism Act

2009-11-11T22:23:11Z

Autism Speaks has announced (possibly incorrectly) that the IACC (Interagency Autism Coordinating Committee) has included vaccine language in the Strategic Plan.

Autism Speaks has posted their statement on their website.

Here is the statement (from their press release):

In enacting the Combating Autism Act (CAA), Congress intended that the federal government examine potential links between vaccines and autism. During the Senate debate over the CAA, Mike Enzi, Chairman of the Senate Health, Education, Labor & Pensions Committee, instructed that “no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder.” 152 Cong. Rec. S8772 (Aug. 3, 2006). In the House, Joe Barton, Chairman of the House Energy and Commerce Committee, was equally clear: “[T]he legislation rightfully calls for renewed efforts to study all possible causes of autism – including vaccines and other environmental causes… The important thing to understand is that there are no preconceived notions contained in this bill; the bill language is clear that we should follow every avenue that science opens to us in searching for a cure.” 152 Cong. Rec. H8787 (Dec. 6, 2006)

Beyond this clear directive of the CAA, Autism Speaks supports rigorous, evidence-based scientific research onto all aspects of autism from potential causes, including both genetic and environmental factors, to diagnosis and treatments. As such, we strongly urge that further vaccine safety research be included in the Strategic Plan for Autism Spectrum Disorder Research. Comprehensive “good” science should be the standard in all areas studied and there are aspects of vaccine safety research that have not yet been, and should be, considered.

It is also essential that all scientific research recommended by IACC and funded by the NIH be rigorous and evidence-based to engender the trust of the scientific, medical and entire autism community. Without a solid foundation that supports confidence in scientific conclusion, the entire portfolio of scientific research is at risk of losing community trust. Further, vaccine safety research will increase both the level of confidence in the safety of our nation’s vaccine program and the rate of participation, which is absolutely crucial for the prevention of serious infectious diseases.

Autism Speaks calls on the IACC to consider the importance of evidence-based science, trust, and to remain true to the critical legislative purpose of the Combating Autism Act and asks the IACC to include vaccine safety research in the strategic plan.

The statement that vaccine research is a “clear directive of the CAA” is, simply, false.

The CAA (Combating Autism Act) does not include the statements by congressman Barton and Senator Enzi are part of the congressional record. They are statements made by the individual legislators.

They are not a part of the Combating Autism Act, much less a clear directive of the Act.

IACC includes vaccine language in strategic plan?

2009-11-11T20:25:46Z

I was unable to listen to yesterday’s meeting. But according to a press release from Autism Speaks:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

I am an autism parent

2009-11-10T07:05:54Z

I’ve been thinking of this post for a long time. Pretty much since the first day the Autism Speaks “I am Autism” video came out.

I would have loved to make a response to the video, as in “I am Socks” or “I am Autism Speaks“.

I’m just not that creative. But I am able to lean on other people’s creativity, which I’ll do here in this blog post. First I’ll restate: First I’ll restate what I have said before: I didn’t like the way “I am autism” put the focus on pretty much everyone except the autistics. I didn’t like how it framed autism in terms of how it costs those of us non autistics. I didn’t like how the heroes of the story weren’t the autistics themselves.

I think a commenter to this blog, Emily reflected much of my views when she commented,

I’m no warrior. I’m doing the job I signed on to do when I decided to bear children. I took on that responsibility—whatever it entailed—when I, an adult, made that decision. There’s nothing warrior like or heroic in that. Heroes face fear and move forward in spite of danger. I can’t lay claim to that.

But these kids who fight every day to learn or bear the inputs around them or self regulate, who live minute by minute in ways that the neurotypical could only vaguely understand if they were packed into a echo chamber full of revving jet planes, these kids and autistic adults are the real fighters. I think of the severely affected children I know, how I’ve known them to work up the courage to do something terrifying to them, something that to a neurotypical would be barely noticeable. I’ve watched these kids hesitate, wait, stim, think, and then rush headlong with extraordinary bravery into it. That’s a hero.

Many people don’t like the way I am framing this. They say that people like me downplay the difficulties of being the parent of an autistic child. I point them to a recent post where Kev noted:

We all struggle. Its damned hard, we all lack services, all autism parents all over the world

Yes we all struggle. Is this supposed to be news to those outside the autism communities?

Guess what, I was a burden to my parents. I cost them money. I cost them heartache. All this even though I am not autistic. I was just their kid.

And, yet, somehow, they never once spoke of me in terms of how much I cost them.

Why should I treat my kid differently?

I am constantly reminded of the old movie Boys Town, and the real life Boys Town that exists to this day. If you remember the movie, you probably know where I am going with this. I admit, the image is a bit sappy by today’s standards, but I keep flashing on the statue and the slogan that Father Flanagan used for Boys Town: “He ain’t heavy, he’s my brother“.

Does anyone really believe the little kid isn’t heavy?

If that doesn’t make the point, let me put it another way. How many disability groups are there where the parents focus attention on themselves and the how much of a burden their children are?

One of the arguments often made is that Autism gets lower private funding that pediatric aids, juvenile diabetes…many other conditions. If those communities can pull in more money than the autism communities, we certainly don’t need to spend our children’s dignity in a quest for funding.

I always try to write as though my child will someday read and understand what I have written. Whether it will come to pass or not is irrelevant. Why should I write differently if I think my kid won’t understand what I say?

If this should come to pass and my kid reads what I have written, I realize that I will have to explain to my kid why at times I have been childish or lost my temper. But my main goal is that I hope to keep to a minimum the number of times I have to apologize for disrespecting my kid.

With all due respect to fellow autism parents Alfonso Cuarón and Billy Mann, I don’t consider “I am autism” to be respectful.

Once again, I will rely on someone else’s words, words from another songwriter. After I listened to “I am autism” I had to listen to this song. I listened over and over again. The song? “For Good” from the musical Wicked by Stephen Schwartz.

Here are the lyrics:

(Glinda) I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I’ve been changed for the better?
But because I knew you
I have been changed for good

(Elphaba) It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You’ll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend…

Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I’ve been changed for the better?
But because I knew you

(Glinda) Because I knew you

(Both) I have been changed for good

I have not said that my life is the same as if I never had a family. My life is also different than if my child had somehow been someone else, someone not disabled.

Like any parent, I have been changed by having a family. But when I go, my message to my child is simple: your impact on me is measured in the handprint you left on my heart. You changed me, for good.

If you haven’t heard the song, here it is as sung by Lea Salonga and Jennifer Paz

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IACC full committee meeting tomorrow

2009-11-09T23:08:53Z

The Interagency Autism Coordinating Committee will be meeting tomorrow (November 10th) “to discuss recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research.”

You can listen in with
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Here’s the agenda:

Time Event
8:30 Registration
9:00 Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
9:10 Public Comments
9:30 Approval of October 23, 2009 IACC Full Committee Minutes
9:40 Consideration of Strategies for Updating the Strategic Plan
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC

How much change to make to the current Strategic Plan?

Examples of Questions for Discussion:

Will adding or significantly re-writing chapters be helpful or confusing to the research community? Does this vary by chapter?
Will adding/deleting objectives each year be helpful or confusing to the research community? Does this vary by chapter?
Should the update include progress from the portfolio analysis for each objective as an indicator of accountability? What will this mean if objectives are re-written or deleted?

9:50 IACC Discussion of Strategies for Updating the Strategic Plan
10:30 Break
10:45 Recommendations for Updating the Strategic Plan: Discussion and Votes

Questions 1, 2, 3, 4, 5, 6 and Infrastructure Items

12:00 Lunch
1:00 Recommendations for Updating the Strategic Plan: Discussion and Votes – Continued
3:00 Break
3:15 Recommendations for Updating the Strategic Plan: Discussion and Votes – Continued
5:00 Closing Comments and Adjournment

Recovery Act Funds Support Strategic Goals for Autism Research

2009-11-09T22:56:56Z

The National Institutes of Health were given a large amount of money as a part of the economic stimulus package.

I just got the email below from the NIH autism listserve and thought some people reading here would be interested:

_________________________
The National Institutes of Health (NIH) awarded more than 50 autism research grants, totaling more than $65 million, which will be supported with American Recovery and Reinvestment Act (Recovery Act) funds. These grants are the result of the largest funding opportunity for research on autism spectrum disorders (ASD) to date, announced in March 2009.

Awards were based on the quality of the proposed study and how well it addressed short-term research objectives detailed in the Interagency Autism Coordinating Committee’s (IACC’s) Strategic Plan for Autism Spectrum Disorder Research.

“These studies currently hold the best promise of revealing what causes autism, how it might be prevented, what treatments are effective, and how service needs change across the lifespan-questions noted in the IACC strategic plan as critically important to improving the lives of people with ASD and their families. The Recovery Act funding makes it possible to do the type of innovative research necessary to find these answers more quickly,” said Thomas R. Insel, M.D., director of the National Institute of Mental Health (NIMH), part of NIH, and IACC chair.

Examples of awarded studies include:

· Catherine Lord, Ph.D., of the University of Michigan, and Somer Bishop, Ph.D., of the Children’s Hospital Medical Center in Cincinnati, will lead a two-site study to adapt the Autism Diagnostic Interview-Revised-the current gold standard for diagnosing autism-into a brief parent interview that can be done over the telephone. This new tool will help reduce research screening costs and help researchers to quickly identify potential participants for ASD studies.

· David Amaral, Ph.D., Sally Rogers, Ph.D., and Judy Van de Water, Ph.D., all of the University of California Davis, aim to expand on a previous pilot program to identify different subtypes of autism based on behavioral, biochemical, and brain imaging markers. This research may help improve future efforts to study, diagnose, and treat children based on their subtype of autism.

· Joseph Buxbaum, Ph.D., of Mount Sinai School of Medicine; Richard Gibbs, Ph.D., of Baylor College of Medicine; Gerard Schellenberg, Ph.D., of the University of Pennsylvania; James Sutcliffe, Ph.D., of Vanderbilt University; and Mark Daly, Ph.D., of the Broad Institute at MIT; will lead a collaborative network of research labs and centers using cutting-edge technologies to discover specific genes underlying autism. Their research will provide insight into the biology of autism and expose genes and pathways that constitute high priority targets for the development of novel treatments.

· Sally Rogers, Ph.D., and Laurie Vismara, Ph.D., both of the University of California Davis, aim to develop and test a parent-delivered preventive intervention for infants 6-11 months old who are at high risk of developing ASD because they have an older sibling with the disorder. The intervention will focus on reducing atypical behaviors and developmental delays to help lessen or prevent the disabling symptoms associated with ASD.

· Olga Solomon, Ph.D., of the University of Southern California, will lead a study on how race, gender, socio-economic status, family culture, and communication during clinical encounters affect the health care experiences of African American children with ASD in an urban setting. Such research may help reduce the existing disparities in ASD diagnosis and service delivery for this and possibly other underserved populations.

· Ruth Carper, Ph.D., of the University of California San Diego, seeks to fill a gap in scientific understanding of the effects of ASD in later life. By exploring age-related changes in cognition and possible protective factors, as well as the changing service needs and quality of life concerns among adults and older people with ASD, this project may reveal targets for intervention and inform public policy.

· Rob McConnell, M.D., of the University of Southern California, and colleagues will explore possible links between traffic-related air pollution and ASD risk. They will also examine genes that help process pollutants in the body among children with and without autism to determine how these genes may affect ASD risk.

· Steven Camarata, Ph.D., and Mark Thomas Wallace, Ph.D., both of Vanderbilt University, will evaluate the effects of “sensory integration treatment” on communication and social skills in children with ASD. Based on desensitization techniques, this widely used but little studied treatment is believed to help reduce children’s resistance to outside stimuli and improve the integration of sensory information.

In addition to the contributions of direct findings from these studies, much of the data will also be available to other researchers through the National Database for Autism Research (NDAR). As a tool for the autism research community to exchange research related information, this use of NDAR is likely to advance the understanding of ASD heterogeneity to a far greater degree and at a more rapid pace than would be possible through any single project.

The grants will be administered by the five NIH Institutes that currently fund autism research: the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Environmental Health Sciences (NIEHS), and the National Institute of Neurological Disorders and Stroke (NINDS), with NIMH taking the lead on this effort and providing more than half of the total funds. This effort is included in the $5 billion in grant awards for biomedical research supported through the Recovery Act during FY 2009, as announced by President Obama during his visit to NIH on September 30, 2009.

H1N1 really does kill people

2009-11-09T21:23:10Z

Its always a bit of a dilemma when writing an entry that doesn’t really touch on autism at all. But I have become convinced that the population beyond the autistic and autism community need to know that most of us within these communities do not support the know nothing anti-science, anti-medicine and most of all, anti-vaccine community that has a vocal minority place within our communities and that as such we owe it to our societies to vocally counter these idiots such as those at Age of Autism who spread lies and promote an age of ignorance.

I’ve heard it said by writers and readers of blogs like Age of Autism and sites like JABS that H1N1 is ‘no big deal’ and that the H1N1 vaccine is a dangerous and untested shot. Both of these things are untrue.

My partners youngest daughter (not autistic, although her eldest is) recently received an invitation to participate in the H1N1 vaccine testing which would involve three visits to the local hospital over a four week period. And over the 4 week period they would take two blood draws. This is for an ongoing safety and efficacy testing.

Swine flu is a big deal. In the UK there have been over 150 deaths since June 2009. Thats about 1 death per day.

In the US, the latest FluView weekly roundup notes 18 flu related child deaths of which 15 were due to H1N1. Fifteen in 7 days.

Next time someone says H1N1 is a ‘nothing’ issue, point them to these stats, behind which lie the dead bodies of real people.

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Hangin’ with the Wiggles

2009-11-09T20:07:05Z

If you have watched a lot of Wiggles videos (and I have watched A LOT), you may have noticed that the Wiggles are special needs friendly. They don’t make a big deal out of it which is cool. They just include some special needs kids in videos.

For anyone who is wondering, The Wiggles are an Australian rock group that sings children’s songs. They have TV shows and videos. They also tour.

This is how we met the Wiggles. When they came through our fair city, we attended a “meet and greet” session with them. Ninety minutes before the concert they spent some time with a small group of families.

We were “on the list” so we arrived early. A representative from the Wiggles checked the list and let the few families in and escorted us to where the “meet and greet” would happen.

As we waited an extremely buff “Wiggly dancer” talked to us. Very friendly. Would you expect anything less from the Wiggles?

They sat us down in one of two sets of chairs waiting, and then The Wiggles came in. Sam, Murray, Jeff and Anthony. They were very cool. They obviously had to get ready and there were a number of families in the “meet and greet” but they didn’t make anyone feel rushed. They talked to us and best of all they were very cool to the little nonverbal guy flapping wildly with excitement. There was time for pictures.

It makes for a very long day. You show up early for the meet and greet and that is an hour and a half before the show, then there is the show. Our little guy got overloaded before the show was over but all was fine once we got of the main auditorium.

Jeff, Murray, Sam, Anthony (and you too Greg!), and all the Wiggly dancers past and present: thank you!

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Time Magazine picks up “I am Autism” protests

2009-11-09T20:12:45Z

Time magazine has an article online today, ‘I Am Autism’: An Advocacy Video Sparks Protest. The article notes the protests staged in response to the I Am Autism video. (I have made my own position clear on the video Autism Speaks media campaign…I am autism, Why I don’t like “I am Autism”, I am autism video removed from Autism Speaks’ website…or is it?, The Autism Speaks bait and switch with I am Autism, and ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices.)

Time starts out with the controversies in the autism communities:

Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder — its cause, its treatment, the way it is diagnosed, how it is studied — is subject to bitter dispute, sometimes to the point of death threats.

Time has comments from the Autistic Self Advocacy Network’s Ari Ne’eman.

Some autistic “self advocates” are furious over the tone of the video. “We don’t want to be portrayed as burdens or objects of fear and pity,” insists Ari Ne’eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. “Apparently, should my parents divorce, it’s all my fault,” says Ne’eman, who received a diagnosis of Asperger’s syndrome, a relatively mild form of autism, at age 12.

Also, they quote Peter Bell of Autism Speaks:

“I Am Autism,” which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.

Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. “We are looking at adding individuals with autism to various advisory committees,” he said. The group is also initiating a better outreach to adults with autism.

I would welcome (to put it mildly) Autism Speaks getting some autistic representation in their organization. I think “advisory committees” sounds a bit weaker than the sort of representation I’d want to see, but it is a start.

As an aside, can someone explain this part of the article to me?

He notes that other disability groups have moved away from using fear and pity in their media campaigns. (See the best and worst Super Bowl commercials of 2009.)

OK…I’ll grant you that Super Bowl Commercials are not big on Pity and Fear, but it just doesn’t seem to fit the story.

Time has linked to protest videos “I am socks” and “I am Autism Speaks”

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