Sunday, June 29, 2008

Back to 'Reality'

It is Sunday evening, and the clock is ticking on what turned out to be a very heady week. Between one radio interview, one television interview, one interview for a documentary in progress, three presentations, and a panel discussion, this week turned out to be steeped in engaged and fascinating discussion and action. And now, after a weekend of hanging out with my boys, picking fresh fruit from the orchard, swimming, taking the dogs for long walks, blogging as a means of processing all that happened this week, I feel refreshed and rejuvenated. I also feel encouraged by the response our actions garnered this week in the worldwide autism community - both online and in the live local community. I am encouraged by the communication I am having with other Hub bloggers who would like to see similar events take place in their locales.

But, as so often happens in life, I soon came across something that reminded me that there is a lot of work left to be done.
Harold Doherty is the father of an autistic boy named Connor. Anyone who has read Mr. Doherty's blog will recognize Connor as the vibrant, tall, active young guy in many photos and videos. Mr. Doherty is an involved, doting, loving father as is plain for anyone to see. He also is a hard-working advocate for autism services - in particular, Applied Behavioral Analysis - in Eastern Canada.
So what, then, would motivate Mr. Doherty to write the kind of offensive, utterly pointless blog post that appeared on Facing Autism In New Brunswick today?
In the post, he first takes some potshots at Dr. Roy Richard Grinker and Dr. Kristina Chew ("some professors of cultural anthropology and classical literature") by virtue of assigning to them a position that neither has taken. Mr. Doherty claims that they
"...believe ...[that]... there are no environmental causes of autism and there is no autism epidemic. ALL of the dramatic increases in the numbers of autistic children and adults are due ENTIRELY to the definition changes in the DSM and to diagnostic substitution."
This statement is patently and verifiably false. But not only does Mr. Doherty create a false position for Dr. Grinker and Dr. Chew, he also fails to even provide a decent summary of the evidence-based reasoning that they and so many others have used to determine that any comparison of today's autism prevalence figures to those in the not-too-distant past would be flawed and mostly useless. Even more egregious is Mr. Doherty's failure to point out why people such as Dr. Chew and Dr. Grinker - themselves parents of autistic children - choose to eschew terminology such as "epidemic". I can't speak for them, but I suspect it may be that they understand this type of rhetoric to be harmful to autistic people.

Having established in the first paragraph that this particular blog post will be yet another "hit piece" against 'neurodiversity' and anyone associated with it, Mr. Doherty goes on to underwhelm us with yet more evidence of his slippery slope into autism quackery. Let's select a few words he uses in his effort to convince the reader that epidemic-panic is justifiable:
"mercury", "lead", "pesticides", "exposed", "increasingly toxic bath", "triggers".
To state this another way, Mr. Doherty must convince you that there is an autism epidemic in order for you to buy his premise that an elusive "trigger" is causing all of this destruction. And, to establish this premise, he uses an ad hominem attack against people who disagree with him.

Dr. Grinker has applied his accumulated knowledge of autism study in numerous cultures and within a historical context as a means to help us understand some of the more vague and subtle factors that may be influencing prevalence figures. Mr. Doherty dismisses this body of evidence with the angry stroke of a key. Dr. Chew performs perhaps the most complete and thorough review to be found in the world today of day-to-day developments in autism media, research, and real life communities. Mr. Doherty huffs and puffs as a means of discrediting her careful, thoughtful commentary. Both Dr. Grinker and Dr. Chew are parents of autistic children, and have been so for longer than Mr. Doherty. Both have chosen to emphasize their child's strengths over deficits, and this is where they and Mr. Doherty diverge. That is where many of us and Mr. Doherty diverge.

Mr. Doherty goes on to summarize his rant by citing his pet term, the "Autism Knowledge Revolution". And yet he offers us no new knowledge, not even any original thought on the "epidemic". Perhaps he really means the "Autism Bluster Revolution", a battle front which he has engaged for quite some time now.

What amazes me sometimes, and was one reason for writing this post, is the ongoing spite in the autism community online. I was first "singled out" by Mr. Doherty one year ago, after I attended and blogged about my first University of San Diego conference. At that time, I was attacked for discussing the difference between "deficit model" and "dynamic systems model". I still recall being stunned by someone taking a negative view of what I considered to be a very appropriate and complex approach to understanding and supporting autistic people - especially those who have serious communication impairments. (Link -read the comments) Now it is a year later, and nothing has changed.

I also realize that I, and the Autism Hub in general, probably gained more than a few readers due to the exposure that was generated last week. It is important that people understand the range of mentalities that exist in relation to understanding autism, and people such as Mr. Doherty clearly approach the whole thing from an entirely different angle than I do.

So I will make the same offer again that I have numerous times in the past - to have Mr. Doherty engage in a calm, respectful discussion on any of the various points of disagreement. I'm not expecting a different result, but the offer is there for the taking, as always.

Aside from that, my return to "Reality" has been as discomforting as it has been ... expected.

Friday, June 27, 2008

Inadequate Summary, Part 2

In my first conference summary, I wrote about the morning before the presentation and the presentation itself. I left out at least 100 anecdotes, but the gist is there.
Later that day, we were scheduled to do a breakout session for 90 minutes. And to close the conference, all speakers were invited to be part of a panel discussion.

First, let me finish relating a bit about Peyton Goddard.
During the presentation, we were each to choose subject matter that was important to us and relevant to our understanding of the value of the Autism Hub community. One thing that was quite profound to me was the compelling difference of views of autism that are embodied by the Hub's overarching philosophy versus someone who could actually take the life of a child, as happened to Katie McCarron. I am deeply respectful of Katie's family, especially having gotten to know her grandfather a bit, and I wrote to ask him permission to talk about this during the conference. Mike McCarron gave me his blessing.
On that topic, I chose to read Mike's Open Letter to the Autism Hub, followed by a moment of silence to honor Katie. What I didn't realize, mainly because I never looked up from Mike's letter as I read it for fear of being a bit overwhelmed by 200 stunned, silent pairs of eyes on me and the emotion of trying to grapple with the loss of a precious little girl, is that Peyton had been unable or unwilling to remain in her seat while I was reading. She had moved to the edge of the theater, perhaps even left for a bit.
(I said in my last post that I would talk about what Peyton wrote if she granted permission to do so. Today, she gave me permission via her father, Patrick).
Fast forward to the moments before we were to begin our "breakout" session. Peyton was in the auditorium again, in the front row typing a message. She finished typing and then immediately left. Her mother had transferred her words to a slip of paper, which she gave to Estee. She told us that Peyton had written the message for Estee and Bev. Consider the subject matter I just related to you when reading Peyton's words:

"Queer is equated to fear and pity. It should = Love."

Peyton also wanted us to know something she has said at an earlier time, but is also relevant to the content of the conference.
"We need to stand on each other's shoulders in order to reach our common goal."

I hope you are now getting a better feel for why I am referring to these posts as 'inadequate summaries'. How am I supposed to impart to you how all of this felt as it occurred, moment after moment, all day long? I can't do it. I don't have the words.

Okay, so back to the breakout. Our morning presentation ended at 12:30 (...sorry, Jodi, I know we were supposed to be done at 12:00. But we were kind of on a roll at that point). Lunch was one hour long. At 1:15 the five of us convened on stage to admit to each other that we had nothing for the breakout. We were done, we had exhausted our repertoire of videos and slides and anecdotes. But wait! James had a great video we hadn't shown - Belong. We would play that to get things going. And Bev had a slide show we did on Tuesday's breakout - Myths about Neurodiversity and the Autism Hub (good stuff). Estee has a chapter in a new book, and she would do a reading. Camille and I would, well, um, we would lend support.
We made it through James' video and as Bev's slideshow went on, the audience and us Hubbers began a dialogue. Long story short, Bev never got the chance to finish her Powerpoint. What happened, instead, was a fantastic discussion covering all kinds of topics. I want to point out in particular that this breakout group had just sat through a long, 2-hour session with us and opted to come back to interact with us some more. I wish I had taken notes during all of this, as the discussion was deep and important. A round of lattes and slices of lemon loaf would have made this feel like a fireside chat. It was really refreshing, thought-provoking, and productive. Thanks to that small group of people for selecting our breakout.
I need to take a moment here to also acknowledge and thank HollywoodJaded for her attending the conference and for her overall support of all our efforts. HJ is one of our Hub webmasters, and none of this would be possible without hers and Dave's efforts to keep a good thing going. HJ also took some pics, and I'd like to use one to segue to the next session - the panel discussion...

A bit of lead-in. I worked in the weeks before the conference to increase the attendance of autistics. Dr. Anne Donnellan and Dr. Jodi Robledo worked with me to ensure that a minimum of obstacles existed for autistics to attend. I then asked Ari Ne'eman to help me spread the word that at least one "Autism" conference had every intention to include "Autism". Though I hope we do better next time, several autistic folks did attend. I'll keep to a first name basis for now and say that Steven, Lauren, and Sara were the attendees. They had attended the entire conference, but only in the last moments before the last session - the panel discussion - we asked them to join us on stage. It was time to provide a voice to the self-advocates that were not presenters. Lauren opted to stay in the audience. In the following picture, you will see some of the panel members, L-R:
Stephen Hinkle, Darlene Hanson, Steven K, Sara L, Me, and Kate McGinnity:

What I really enjoyed during this segment was the interchange between various people on the autism spectrum. In one memorable moment, a young woman in attendance with her mother stood up and declared her preference that she be considered to be a "person with autism" as opposed to an "autistic person". She cited several reasons for feeling this way. I utterly respect her assertion of this viewpoint, and the way in which she clearly and diligently stated her case. We often throw the word "self-advocate" around, but here is a case where actions speak louder than words. I would be remiss if I didn't also mention Steven K, Bev, and Camille's responses on the same topic. Though they all disagreed with the original speaker's viewpoint, it was eminently clear the respect that existed between all individuals with divergent points of view. Moreover, the point was not lost on me that here were 4 autistic people, engaged in a really good discussion that is highly relevant to self-esteem and identity, while close to 150 NT's observed, and learned, and for the most part stayed out of it. Is this not what it is all about? From Peyton's note to this exchange of ideas, I hope you can grasp the importance of all that transpired.

Thursday morning, I woke up at 4:45 to go to work. The conference was over. I was exhausted, but felt really good about what had happened. I was still processing the many levels of information I had immersed myself into, I was still in a mildly unsettled state I often feel after putting myself "out there" like that (I am not a highly social creature), I was physically tired and even more so intellectually, and I was acclimating to the fact that - several years now after becoming an active participant in the Autism community as I know it - many people have forgotten more than I have yet learned.
And before I drove off to get back into the workaday routine, I did a quick email check.
I had received an email from Autreat. Several people had listened to the MP3 of the interview Bev and I had done on NPR and were writing to express their enthusiasm for the message we sent that day. One person was listening with xyr child, a young adult, who was "squealing and cheering" during the playback.

For a community which is supposedly impaired in the area of relationships and communication, the "experts" may be surprised at the prevailing level of interconnectedness.

Thursday, June 26, 2008

An Inadequate Summary of the Hub at USD Part 1

What follows is a completely inadequate summary of the occasion of The Autism Hub presentation at University of San Diego's Autism Institute on June 25, 2008. The reason it will be inadequate, the reason that I know this even before committing it to paper, is that it would be impossible to capture the spirit and energy of that day in a simple blog entry.

It began with a toast.
Bev, Camille, Dad of Cameron, Estee, and I all met in Old Town San Diego at a landmark San Diego restaurant - the Old Town Mexican Cafe. Its the kind of place with wire-back chairs in a stuffy room and slow service, but that still has a 45-minute wait on a Tuesday evening. And has for decades.
When we sat down for a joy-filled dinner, it was the first time several of us had met in person, despite e-knowing each other for a couple of years or more. Though the next morning we were to present to a crowd of 200 and we were just getting a feel for each other, we just flat-out had a great time. If you think you might have come up during our dinner conversation, you probably did. When Do'C asked the Mariachis to play Jalisco, we knew it was time to call it a night. But not before we toasted the fact that we had all come together, spanning three states and two countries, to talk about what we do.

Next thing we all knew - the next morning - we were hustling around in a media room in the Joan B. Kroc Institute for Peace and Justice (certainly an apropos location for the subject matter), transferring files from laptop to laptop, testing software versions and compatibility, running through various ways to reshuffle and reorder the presentation due to aesthetical, timeframe, and technological issues. If one was not careful, one might by impaled by a flying memory stick in that busy room. After a very quick 90 minutes, Dr. Jodi Robledo came in and said we had access to the auditorium in 5 minutes. But we were only 20 minutes into our first run-through!

As we set up on stage in the main auditorium ( a beautiful room in a world-class facility), I noticed that Peyton Goddard came in the room with her parents. Peyton's friend, Lisha, had already been there filming, and I was hoping this meant Peyton would be attending. She came over to the relatively empty side of the auditorium where my Mom (who came to see our presentation) was sitting and joined her for a while. In the meantime, the couple of hundred guests filed in and took their seats. The audience was predominantly educators and service providers, there were a number of parents, there were three self-advocates who had come down from Orange County, Stephen Hinkle also joined us later, and I believe two other autistics were in attendance.

The presentation, as we were told later, came together perfectly. Though we each individually had chosen our won subject matter, what resulted was a symphony of perspectives, assertions, and concepts that hit on seemingly every cylinder. From Estee's video, "Adam Speaks" to Bev's talk and video on the importance of respectful language, from Do'C's cheerleading (literally) and logical presentation about the "epidemic" to Camille's deeply insightful discussion of bias and stereotyping (bias: don't think you have it? Guess again...), from lots of laughs to some very touching moments (a moment of silence for Katie McCarron), we hopefully brought the attendees through as many aspects of the Autism Hub as can be accomplished in 2 hours.

In one of the more touching moments I experienced (there were many more that I am not fitting into this post), Peyton sat with her parents in the front row of the otherwise-empty auditorium near the end of the lunch break. Her Mother told us that she was typing something for us that she wanted us to have. After quite a few minutes, her mother had transcribed the brief note Peyton had worked so hard to write. The words were powerful, poignant. I will share them if I receive permission from Peyton to do so, as I forgot to ask her that day. They left the indelible impression that at least one person had heard our message loud and clear. Strange how this same person is one who I, in my own ignorance, may have "written off" just a few short years ago.

Perhaps in another post, I'd like to describe that afternoon's breakout session, as well as the fascinating panel discussion at the end of the day (please let me know if you are interested in hearing about it).

But in case it takes me some time to get that written, I want to make sure I express my gratitude to Dr. Anne Donnellan for making this whole thing possible. I am probably the 17,000th person Anne has directly impacted in a positive way, and am happy to be in that group. I want to thank Dr. Jodi Robledo for doing the heavy lifting of organizing the conference, despite her pregnancy (congratulations!) and for being the only person to subject herself to more interviews than I did. I want to thank Martha and Kate and Nan for their unabashed support for us "rookie" participants, and I want to thank Stephen, Peyton, Steven, Sara, Lauren, Bev, Camille, and a young woman in the crowd whose name I don't know for adding the "autism" to the "autism conference". I want to thank Diana Pastore Carson for the most heartfelt response to our presentation and for describing the very difficult conditions her brother has endured in the absence of true acceptance from the people who were assigned the professional responsibility to aid in caring for him. And Darlene and J.D., whose breakout I unfortunately missed due to our own occurring simultaneously. If I am forgetting anyone, please remind me and forgive me.

And I want to thank my wife, who valiantly chased, fed, cleaned, cajoled, entertained, moderated between, picked up after, and kept on schedule 3 active boys while their Dad was off sitting on a stage somewhere. I hope I'm improving J's future, I know she is improving J's now.

Monday, June 23, 2008

Hub Hits The Airwaves!

Can I get a witness?
How about 10's of thousands of witnesses?

That's approximately how many people in Southern California learned about the Autism Hub today, as Bev and I were guests on the popular show "These Days". Here is a link to a brief synopsis of our piece.

If you click on previous shows, you will see some other recent guests.
Last week? Poet Maya Angelou. Astronaut Sally Ride. Former WH Press Secretary Scott McClellan.
This week? Bev and Steve.

We had a 30-minute interview with host Tom Fudge. He asked some very interesting questions, ranging from the basic- "What is the Autism Hub?" - to the more complex "Do you believe Autism is a disability?"

It was my hope that the audio files would be available by now, but they are not. Once they are, I will re-post this entry so you can listen in.

My sincere thanks go to Bev, who allowed me to encourage her to do this.
I also want to thank KPBS and Tom Fudge. No one made them choose to allow a positive message about autism to hit the SoCal airways today, and I appreciate the venue to let some people know the good things that are happening in the autism community.

And thank you to those who have re-posted their favorite entries (Club 166, Brett, others). Between the radio show and the USD conference (the first Hub presentation is tomorrow afternoon) I am expecting some new readers to be coming our way.

Sunday, June 22, 2008

All Quiet on the Western Front

Yes, all is quiet today on the Western Front. But not for long...

You see, as I write this post there are Autism Hub bloggers on the way to San Diego. From 2 countries, from 3 states we are converging at University of San Diego to participate in and present to the "Work With Me, Not On Me" conference.
At this conference, there will be discussion of all kinds of aspects of Autism, with an emphasis on how we can provide appropriate and effective education and supports to autistics over their entire lifespan.
Issues of movement, of language, of societal inclusion, of self-image and self-esteem, of fulfilling potential - all of these will be discussed, with respect for autistics as a guiding principle. While I understand the need to look at many different facets of autism and ways to promote a positive outcome for autistic individuals, I am proud to be contributing to this school of thought as I feel it can directly benefit autistics in the long term. There are those who disagree with the importance of toning down the rhetoric, of using positive terms, of emphasizing strengths, of dispelling myths about autism. I submit that we can accomplish these goals without ignoring the challenges of autistics, and while fully respecting the efforts at overcoming the myriad disabling aspects of autism. My good friend, Bev, may have put it best when she wrote in an open letter to parents:
"But I am not your enemy. If you have a child on the spectrum and are hoping to cure him or her, hoping to get rid of the autism, I don’t want to argue with you. Most likely, you and I don’t even use the word “autism” to mean the same thing. If you are one of these parents working to change your child, know that I am working, too. If your quest to change the course of autism fails, perhaps the quest to change societal attitudes will fare better. In which case, your autistic child might have a less hostile world to live in.

That is why I do this."
Thanks for that, Bev.

So today, then, is a quiet day (all quiet...) that precedes a whirlwind of activity. I have always been a huge fan of quiet days around the house, and the proverbial apple seems to have not fallen far from the tree. A little while ago, I walked by J's bedroom and saw the following scene:

Apparently, he is going to read all of those books. There are probably 30 books there. Don't put it past him - he devours books at an amazing rate.

Some other members of the family can't even muster the energy required to be read to. Evidence, Baby C:

So I will continue to work on the various presentations and discussions we will be part of at USD over the course of the day, my fellow bloggers will complete their journeys, and tomorrow we will converge and hope to begin to help some parents, self-advocates, and professionals understand who we are, what we stand for, and why we do what we do. Understanding, of course, that this group is anything but homogenous and represents a huge diversity of opinions and emphasis on different topics.
We also may have a surprise in store. More on that later.

It occurs to me that over the next few days there may be many new visitors to the Autism Hub and to this blog. For those newcomers, here is a brief tour of some good posts from this week that I consider "recommended reading":

Joel Smith writes about how certain autistic strengths may, or may not, translate into employable skills.
Alex blogs about his new personal best in 5K.
Amanda Baggs discusses some difficult communication issues.
Kristina Chew has numerous good posts this week - I would recommend this one about the importance of riding a bike.
Kev writes an Open Letter to those who aggressively promote the vaccine hypothesis.
Club 166 gives a day in the life of the typical autism Dad. Notice its a pretty good day.
Bev recommends some new PECS cards.
Estee celebrates her son moving to 1st grade. This hits home, as J also finished K this year. He tells everybody all about it - I mean everybody. Not much fluff, just in a loud voice with a sidelong glance - "I graduated Kindergarten!". This is currently his pat response to any question asked in public by a member of the community.
Michelle Dawson asks why Autism Speaks seems to have trouble with epidemiological figures.
Ari asks for input for the Autistic Adults Planning Committee.

There is more, so much more for people to learn about from reading these pages.

I'd like for any interested Hub Blogger to consider pulling your favorite post, on whatever topic you wish, and re-post it tomorrow. I have reason to believe that we may have a good number of people wanting to take their first look at what we have to say, and it seems that this might be a good opportunity to put our proverbial best foot forward. If you would like to do so, please re-post your favorite blog entry sometime tomorrow, the earlier the better.

Friday, June 13, 2008

Dr. Omer on Vaccines

I don't spend too much time writing on this blog about vaccines. The reason is not that I don't think it is important - I think this is a very important issue that spans health, politics, science, human and financial resources, and quality of life issues for autistics. The main reason I don't spend too much time on it is that other bloggers such as Kev et al., Prometheus, Kristina, Mike, and Kathleen among many others do such a thorough and marvelous job with current analysis. I appreciate their efforts, and I hope they all know that.

What prompted this post is an interview I read today on a website called Science Progress. The interview was with Dr. Saad Omer, whose credentials you can find here on Johns Hopkins Bloomberg School of Public Health's faculty page. It really caught my attention because I think Dr. Omer has a very clear, concise, well-organized approach to describing where current knowledge stands in relation to vaccine safety and autism causation issues. Here is a set of assertions that is sensitive to all "sides" of the debate, that does not pussy-foot around adverse vaccine reactions, and yet falls back on the current science to draw current conclusions.

As the parent of an autistic child, I am often asked my thoughts on vaccines. There are so many talking points and subtleties that I often find it difficult to summarize why I have arrived at my position without losing them in the details and finer points. So I am posting portions of the interview to my blog, linking to the rest of it, and can use this as a referral when asked this question in the future.

Here are some excerpts:

On the Hannah Poling case:
So to put things in perspective for that case—and in terms of people drawing conclusions from it—I would caution that this is just a case and the question I often ask, even within the scientific community is “where are the controls?” Because when we assess scientific evidence, we need to keep in mind that we need to compare an association of an event with an outcome in both cases and controls, we haven’t had that kind of evaluation yet.
On the Hannah Poling case's significance to autism causation:
And just to clarify why we are on this topic: even if this link is established, and what it says is that mitochondrial disorders, which are a kind of disorder in the cell’s energy mechanism, is proven to be exacerbated by vaccines and result in autism spectrum disorders, metabolic disorders are very rare and it would explain a very small proportion of autism diseases—just to put that in perspective.
On Evidentiary Standards for the VICP:
... the Special Masters of the compensation program, not the HHS, interpreted as having said that the evidence should be evaluated on a standard of “biologically plausible.” I think that’s dangerous, because I can sit here and come up with twenty or thirty different hypotheses which would be biologically plausible on several biological models. We are not talking about probable; we are talking about plausible ... So I think it’s not a very robust standard to go by because what we are saying is that we would have judgments on these cases based on something that could happen, not something that does happen.
On methods to maximize Vaccine safety:
One major program is the Vaccine Adverse Events Reporting system, which is jointly managed by the CDC and the FDA, and events that seem to be associated with vaccines are reported into that system. It’s a good system for generating signals but it has its limitations ... There was a recent analysis published in Pediatrics that showed that most of the rise in reports of autism-related symptoms associated with vaccines has been due to increased reporting of litigation-associated cases. So we have that kind of a problem with VAERS but it still has a lot of utility in terms of generating signals. For example, it generated a signal for the old rotavirus vaccine.
Then the CDC has the Vaccine Safety Datalink. They have put together a system by linking databases from several large HMOs, and it covers approximately two percent of the U.S. population of zero to six years.
Then there is the Clinical Immunization Safety Assessment Network, which is a network of a few centers of excellence, mostly academic centers, coordinated by the CDC, to assess vaccine safety in a clinical setting.
I must say, I think vaccine safety needs a lot more resources than it is provided. Because as I said, vaccine events are rare so you need large numbers to study these phenomena and the resources that are available are very low.
On the risks of not vaccinating:
On the other hand, we know that there is risk of—even an individual level risk—of acquiring vaccine-preventable diseases in the United States if your child is not vaccinated. For example, in a national-level study it was found that kids who are exempt from vaccination requirements had thirty-three times—not percent, it’s times—higher risk of acquiring measles with those who are vaccinated, who do not seek exemptions, and [in a Colorado study] six times higher risk of acquiring pertussis than those who are vaccinated. So there are real risks involved in terms of acquiring vaccine-preventable diseases
On Rubella - very interesting point:
One last point in this regard: we do know that congenital rubella syndrome is associated—and there are some studies showing an association—with autism-like symptoms. So we know that part of that syndrome is explained by a congenital rubella syndrome which used to occur when the population-level immunity in the U.S was relatively low. So actually, MMR vaccine prevents against something that is associated with autism. So if you are thinking specifically in terms of autism, one should consider that we are talking about something that prevents autism.
On sources of information:
It’s several sources. We found in our studies—looking at parents of children exempted from vaccination requirements, compared to those vaccinated—there was an association with types of provider, trust in government, the sources of information people tended to get, information from some of the advocacy sites tended to seek exemptions at a higher rate, etc. So yes. There are several sources of that, and there are passionate people who feel there is an association with vaccines and autism, and that includes some celebrities as well. So that gets people’s attention.
On concerned parents:
On the other hand I must say that most parents, even those that are concerned about vaccine safety, are coming from the right place. All of us want our children to be safe from any harm, including harm from any pharmaceutical interventions.
On adverse reactions and risk/benefit:
One thing that people should realize is that we know that vaccines have some side effects. And we should acknowledge that, everyone who is involved. However, the risk and benefit calculus for all vaccines that are out there, based on our current knowledge, heavily favors not only getting your child vaccinated, but also getting them vaccinated according to the specified schedule.
On spreading out the schedule:
I have seen a new trend where people are splitting the difference and saying, “OK, I’m going to get my kid vaccinated, but I’m going to get them vaccinated late.” Well the risk of illness is not constant across childhood and so that’s why the Advisory Committee on Immunization Practices and the American Academy of Pediatrics come up with these recommendations to look at several factors, including the burden of disease. So it’s important to not only get your child vaccinated, but also to get them vaccinated per specified schedule.
All bold emphasis is mine.

Friday, June 6, 2008

On the Green Our Vaccines Rally

This topic is being more than adequately covered elsewhere, so I fortunately need not go into excessive detail about the Green Our Vaccines rally staged in Washington, D.C. on Wednesday.

I do, however, need to express one level of serious dismay with some of the posters being shown there. Some of the posters were fairly mild-mannered. Some ramped up the rhetoric, using Devil imagery to mock our government health agencies and employing the skull-and-crossbones to imply poison (although vaccines are not in any way poisonous). But the ones the evoked the most visceral response in me were the ones that exploited autistic children. Let me give you an example:

This post has been edited to remove two photos taken at the rally. For a discussion of why the photos were removed, please see the comments section.
The first photo depicted a mother holding a picture of her beautiful son, surrounded by a Skull and Crossbones and the words, "Stop Poisoning our future"

In this poster, Mommy's message to her son is quite clear - your future has been poisoned, you are a casualty. Where else but this rally can you find parents carrying photos of their *live* children accompanied by POISON and TOXIC WASTE symbolism and terminology? I have to wonder if the parents have stopped for a moment to consider the impact of this imagery on their child.
Now take a look at this one:

The second photo had two side-by-side frames. In the first was a smiling little boy with the heading "What God Made". In the second was the same boy in an awkward pose saying "What Man Made".

This is the one that elicited the most powerful response from me, but very likely not for the reason this Dad intended. First off, do you think Dad picked the best 'after' photo to prove his point, or the 'worst'? Am I the only one who gathers the intended message that if he were autistic in the 'before' picture, he couldn't possibly be smiling?
I am deeply bothered by the callous, insensitive nature of this poster. How is a child supposed to feel valued when their own father is going out of his way to cast his appearance/behavior in the worst possible light? This is really foul, really disturbing, and I think provides a chilling example of what happens when anti-vaccination zeal is a more powerful force in someone's life than simple respect for a person, a child.

I recently received a request from a friend to help them with some written assets for a project about how people view "behaviors". The simple request was to review some of my writing about my son and to pick out some examples where I had addressed problem behaviors. The goal of the project is to discuss various ways people refer to autistic behaviors in an effort to highlight some positive, respectful methods of doing so. So I went to work reviewing archived blogposts to find some. I knew I would have to do some digging, since I didn't specifically recall writing directly on this issue. The end result is that I found virtually nothing of benefit except some comments to my posts (not by me). The reason for this, as I discussed with my friend, is that I do not write negative things about my son. I can be frank and sometimes allude to difficult moments or times, but I feel a powerful parental duty to not cast aspersion on my son, the fact that he is autistic, the fact that raising him includes challenges that are directly related to his autism. My duty as a Dad to a 6-year old boy is to keep the world at bay, not to invite it in and hold him forth as a political tool or pawn in an anger and blame game.
Many contributors to the Autism Hub are accused of glossing over autism, of making light, of minimizing autism's disabling aspects, even of ignoring the existence of those who are most severely affected by autism. Perhaps the examples above can provide a good example of why I choose not to dwell on my son's most challenging issues for all the world to read and discuss. Perhaps I have too much respect for him as a person - a person who will someday read this blog and hopefully be proud of his Mom and his Dad and his brothers and who can feel really safe and secure knowing that he is valued as a person - not relegated to the scrapheap of collateral damage.

This philosophy is not new, not something I conveniently stumbled upon as a way to criticize the Green Our Vaccines attendees. My very first post to this blog, Taking Up The Pen, contains this line:
"It occurs to me that, years from now, these words will be accessible to all three of my sons."
But that's just One Dad's Opinion. What's yours?