I was lucky enough to win insurance coverage for my child, covering speech therapy, occupational therapy, and ABA.

There are so many issues involved with insurance that I’ve been unable to attack the issue in a blog post. So, I will be dividing the post into segments, and creating a page on the blog summarizing and linking to the posts as I make them.

Let me know what isn’t clear and I will correct it. Let me know what questions are not answered, and I will answer to the best of my ability.

That said, the first “test case” was the case of a young girl, Michelle Cedillo. It was heard in the Spring of 2007. And it may be coming to a close.

The docket for the Cedillo case has some recent entries that point to a decision being reached. On October 30th, the family filed notice that Petitioners Notice to Waive the 14−day “Waiting” Period. This is followed by an entry (for the same date, October 30th) concerning Petitioners Consent to Disclose.

Rule 18(b) of the Vaccine Rules states,

Decisions of Special Masters and Judges. When a decision of a special master or of the court is filed with the clerk, each party will be afforded 14 days in which to object to the public disclosure of any information furnished by that party

In other words, when a decision is given to the petioners (the Cedillo family in this case) and the respondents (the Department of Health and Human Services), both sides have 14 days in which to say, “I don’t want this made public in whole or in part”.

Since the Cedillo family have given consent to disclose, it sounds like this entry is in response to a decision. There isn’t anything in the docket for the 14 day period before October 30th, like a motion, that they could be responding to.

That was 10 days ago. Given that they waived a 14 day waiting period, one would expect that any decision should have already been disclosed.

It turns out that the HHS requested an extension of time to “respond or reply”. They filed this on November 3rd, and the motion was granted on the 6th.

As a check, a 14 day waiting period is mentioned in Rule 20(b)

(b) Responses and Replies. Unless otherwise provided by the special master or the court, any response or objection to a written motion shall be filed within 14 days after service of the motion, and any reply shall be filed within 7 days after service of the response or objection.

So, things are not so clear. The Cedillos could be responding to a motion (seems unlikely given their wording, using the word “disclose”). Also, the HHS could be responding to the decision (if that is what it is), and this could mean a delay before the decision becomes public.

More on the Autism Omnibus can be found in this summary by Every Child By Two.

I Voted Sticker

This has been the first election in a very long time where it really felt important. Funny, that, since I am in a state where it pretty much a forgone conclusion who will win  our electoral votes.

I can’t tell you what, then makes me want to add my vote, but still I was in the “I have to do this” rather than “I really should do this” mode today.

I am not a one-issue voter. At the same time, I definitely put a lot of weight on issues affecting the disability community, especially the autism community.  Probably no surprise there.

I’ve been one of those “pale blue” people.  You know, like the maps at CNN where states “leaning” towards Senator Obama are pale blue.  That was right up until the last debate.  When Senator McCain brought autism front and center into the discussion, I got very interested.  Unfortunately for Senator McCain, I started watching and listening closely and I just wasn’t sold.

I knew that Senator Obama had a fairly thorough disabilities plan.  I didn’t know what Senator McCain had to offer, and I didn’t find much when I searched.   There are a lot of discussions of the two candidates out there already, so I won’t add to them here.

No matter what happens today, I am amazed.  I never thought I’d see the day when an African American would have a good shot at the White House. OK, if pressed, maybe I’d have thought that in 10 or 10 years, maybe.

Aside from the Presidential election, there were other issues that really caught my attention.  California has “proposition 8″ on the ballot.  This proposition would remove the newly won rights for gay and lesbian couples to marry.  For the life of me, I can’t see how allowing gay marriage is any threat to my marriage.  I’ve been avoiding TV lately, but recently I’ve watched and seen a barrage of commercials with sad faced little kids.  I guess they are supposed to be sad because they are being taught about gay marriage in school.  I checked with my family (who have older kids) and no one can recall of anyone ever being taught about marriage in schools.   Even if they did, so what?

Another type of issue that caught my attention is public transit.  California has a fast-train bill on the ballot, and there are other, local public transit issues as well.  Most have language framing them as “green” or helping us to gain independence from foriegn oil.  Those arguments didn’t sell me.  What did sell me is the view of, “there are people who can’t drive.”

I will say, in the end, dang, I’m glad this is over.  The presidential race, primaries and all, has just gone on too long.  I hope the result is worth it!

As an aside from the vaccine debate, I think we all need to say, “Go Charlie!!!”. I’ve read about Charlie (and dad) and the bike rides, now I’ve seen it. Good job, master Chew!

Here’s the Today Show segment:

The part with Kristina shows up about Minute 4 of the video. Kristina discusses bike-riding Charlie on the Today show on her blog.

The first part, as you can imagine, is about Dr. Offit and the vaccine/autism question. This story starts by focusing on the controversy–centering on the anger that has been focused on Dr. Offit.

The middle section (again, about minute 4) has Kristina Chew and family.

There is a very interesting exchange at the end between Dr. Nancy Snyderman (who ran the piece) and Matt Lauer of the Today Show. Dr. Snyderman does a good job of keeping Matt Lauer from pushing promoting the idea that the question is “controversial”. Matt Lauer pushes the idea that it is controversial amongst parents, while Dr. Snyderman keeps to the theme that this topic is far from controversial in any real debate.

Kristina notes on her blog:

The vaccine-autism issue aggravates because it diverts attention from autistic children, from autistic individuals, and fixates on what (despite more and more evidence to the contrary) some believe is a cause of autism.

But, we play the hand we are dealt. Unfortunately, that hand right now contains the vaccine-debate. I, for one, am glad to see Kristina taking on the question in the public eye.

But, in the end, the important stuff–Go Charlie!

I rest my very tired head, every night…I say my prayers and thank God for giving me the ability to be these children’s Mother. I thank God for the blessings I have received. I thank God for letting me be Outnumbered…because, through my husband and my children, I have been more blessed than I can ever have imagined.

One event for the week was the publicity for the “Stop Jenny” website. This was picked up by PZ Myers’ Pharyngula blog (a very well read, non-autism blog). Respectful Insolence (also high-volume, non-autism blog) plugged the site as well. In the autism-blog realm, this site (autismlibrary.org) and AutismVox noted StopJenny.com as well. A website with a similar mission, the non-generation-rescue-non-Jenny-McCarthy rescueangel.org gives a discussion how there are adverse events associated with biomed treatmements.

StopJenny has broken out, even beyond the ScienceBlogs (PZ Myers), into Bad Astronomy, via SkepticDad.

Another event for the week was the Every Child by Two call for action. ECBT has its membership asking for the Oprah Winfrey Show to take a look at vaccines and the vaccine/autism question from a different perspective than they’ve done with Jenny McCarthy. We joined in the call, as did LeftBrainRightBrain and I speak of dreams.

Fat Doctor picked it up from I speak of dreams. It is always interesting to see how some of the autism topics are playing out amongst the non-autism community. The comments there range from the usual “there’s antifreeze and aborted fetal tissue” inaccuracies to a comment like this fraction of a message sent to Oprah:

Please consider providing a counter-point. Physicians, scientists, public health workers and legislators are working together to improve the health of our communities. Please give them the same voice you gave Jenny McCarthy. Consider having the mothers of children who’ve died from these diseases *in the last year* on to show the human cost of poor immunization rates. Consider bringing in the parents of autistic children who haven’t been “cured” by Ms. McCarthy’s plan… parents who are frustrated at the diversion of precious Autism research funding to red herrings like vaccination & heavy-metal-toxicity.

On the flip side, Respectful Insolence makes a good argument that approaching Oprah to do a show on vaccines and autism is problematic. A good discussion and a good-ratings TV show are very different things. It is likely (and something promoted by many who support Jenny McCarthy) that Oprah might try to make it a debate rather than a discussion by bringing people like Jenny McCarthy and doctors like Dr. Jay Gordon to the show.

Jenny McCarthy has already shown the tendency to leave good manners (as in shouting obscenities) or accurate discussions behind her when the cameras are rolling (she might do the same without the cameras, but I have not been there to see it). A good example of this is her discussion of her son dying after vaccination. I will never downplay the experience she went through. But, her phrasing has led many to think (and state on the internet) that Jenny McCarthy’s son had his seizure immediately following an injection. Based on the story (that his first seizure happened at home as he was waking up), this seems incorrect. It’s a misperception that should be corrected, yet Ms. McCarthy has not, to my knowledge, taken the opportunity to do so.

One a better note, I have to admit that I am a sucker for a cool blog-post title. I got pulled in by Runman’s 1st Annual halloween Hustle 5km Fun-Run. I spotted this link, talking about the Road-ID bracelet. I’ve been meaning to talk about those, and add something to the main site as well, for a while.

Kathleen Seidel’s Neurodiversity.com weblog has a new post up. That blog has a low volume but high impact. The posts are detailed and thorough. This post has to do with another case of overcharging by lawyers and experts in the Vaccine Court. The title, A Motion to Conceal, tells a lot. For the first time, a petitioner asked that the lawyer’s and expert’s names be redacted from a decision.

ABC, through their news and Good Morning America shows, has started “On Call Plus Autism“. This is a series of short videos on various topics in autism.

It turns out Drive Mom Crazy will be a on “On Call Plus Autism”. Another hub blogger was featured in the Good Morning America hour on autism that we’ve discussed before.

I try to end on a lighter note. This week, it’s from LeftBrainRightBrain, who report that an autistic adult has taken to reading Autism’s False Prophets on YouTube. Here’s the “commercial” for “Story Time with Darwin”"

Every Child by Two has asked its membership to “Please Take The Time To Contact The Oprah Winfrey Show”.  The letter is below.  Reprinted with permission–but I think they are happy to see this spread far and wide:

October 16, 2008

Please Take The Time To Contact The Oprah Winfrey Show

It has been quite some time since Every Child By Two (ECBT) has asked you to take action on an issue related to immunizations. I write to you today with an urgent request for your assistance in reaching out to the Oprah Winfrey Show to urge that she dedicate a show to the science behind the question of whether vaccines cause autism. More than fourteen credible studies have been conducted worldwide exonerating vaccines and yet the media and entertainment industry continue to frame this as a debate. ECBT and our public health partners have reached out to Oprah’s producers countless times without success. However, I recently had a lengthy conversation with one of the producers who recommended that we initiate a letter writing campaign by commenting within the Oprah.com feedback section of the website. This information is tabulated to determine whether there is enough interest to conduct follow up shows.

I urge you to take five minutes to fill out the Oprah Winfrey Show online form by following the link below. In your comments, please request that Oprah invite credible scientists and/or physicians to explain the science of vaccines to her viewers. We also would like her to invite parents who have suffered the loss of a child from a vaccine-preventable disease, and a parent of an autistic child who can speak on behalf of the many families that are frustrated over the continued focus on vaccines and their supposed link to autism and the therapies that focus on “repairing vaccine damage”. Please relate any personal experiences you may have with vaccine-preventable diseases or autism. In addition, please refer the Oprah Winfrey Show to Amy Pisani, Executive Director of Every Child By Two, for any follow-up questions. My phone number is (860) 443-1166.

And finally, please forward this to your family and friends and request that they also reach out to the Oprah Winfrey Show..

https://www.oprah.com/ord/plugform.jsp?plugId=215

Amy Pisani
Executive Director
Every Child By Two
(860) 443-1166
www.ecbt.org
www.vaccinateyourbaby.org

Oprah has given a lot of time to Jenny McCarthy as she has promoted her books and ideas.  Isn’t it about time that she gave some air time to the more standard view?

For those unfamiliar with Every Child by Two, their stated mission is:

To protect all children from vaccine preventable diseases by raising parental awareness of the critical need for timely infant immunizations, fostering the establishment of a systematic method to locate and immunize children, and providing convenient access to immunization services into the future.

Every Child by Two is behind the recent “Vaccinate Your Baby” campaign. The spokesperson is Amanda Peet. Here are a couple of the PSA’s that Ms. Peet has done:

Notice that its been “some time” since Every Child by Two asked for action.  Yes, they are taking this very seriously.  The lessons learned from the UK vaccine scares were very hard won.  I’m glad people are taking the potential for disaster here in the U.S. seriously.

Blogs have been covering Jenny McCarthy since her first book. There are also websites from established organizations which have information that counters much of what Jenny McCarthy promotes. But, recently there have been a couple of websites by the autism community itself which are seeking to correct the misconceptions.

The first is StopJenny.com. I’ve known about this site for a little while, but recently I saw it get plugged by some very high traffic sites:

Pharyngula
Respectful Insolence
AutismVox

From a comment on Respectful Insolence, by the authors of StopJenny.com

There are not two sets of rules. The author of the www.stopjennywebsite.com has been requesting critiques all along to make sure the information is accurate. The author then CHANGES the information when shown why any information is inaccurate. Others are not so willing to do so, and freely keep on spreading misinformation. As you can already see, the www.stopjenny.com website has already been corrected, and linked to better sources. Unlike Jenny McCarthy, the website does not propose cures, does not offer medical advice, and does not profit in any way. We are laypersons attempting to undo the damage McCarthy et al are doing. It’s the laypersons that get hurt the most by McCarthy et al. We continue to ask for critiques, appreciate the feedback, and will continue to make any necessary changes to fulfill our purpose to educated and protect those that are being duped by people profiting off of laypersons with books and other products that are promising fake cures. We continue to hope to show why Jenny is wrong. Please email information@stopjenny.com to help us with our purpose.

As an aside, Pharyngula “Poll Mobbed” a Jenny McCarthy web-poll recently. Just an example of how well-read that blog is.

A second site that has been showing up in Google ads recently is RescueAngel.org. No, it isn’t affiliated with Generation Rescue or Jenny McCarthy (as made very clear on the site). Instead, it is a site which gives a description of some of the examples of adverse events associated with “biomed” therapies and autism. Yes, there are times when biomed seems to cause harm. Most biomed therapies, though, are completely untested and there is no one reporting on the adverse events. So, who knows what could be going wrong.

On the one hand, people could (and have) argue that showing a division like this in the autism community is detrimental. If we don’t present a united front, it will diminish our ability to advocate effectively.

I am of another opinion: If we don’t police ourselves, if we don’t point out when segments of the autism community are acting in a reckless manner, we will be in much greater trouble when we try to advocate.

While the name “StopJenny” may sound amusing, it is no joke. Left unchecked, Jenny McCarthy’s “advocacy” will result in people dying from vaccine preventable diseases. It has already happened in the U.K.. Jenny McCarthy seems to be ignoring one of the real lessons to be learned from Dr. Wakefield.

Probably the big news item for the week was the Presidential Debates. Senator McCain pulled autism as a discussion point with

She’ll be my partner. She understands reform. And, by the way, she also understands special-needs families. She understands that autism is on the rise, that we’ve got to find out what’s causing it, and we’ve got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

And,

And I just said to you earlier, town hall meeting after town hall meeting, parents come with kids, children — precious children who have autism. Sarah Palin knows about that better than most. And we’ll find and we’ll spend the money, research, to find the cause of autism. And we’ll care for these young children. And all Americans will open their wallets and their hearts to do so.

It seems to have backfired. Many blogs commented negatively–and these are autism-specific blogs. LeftBrainRightBrain had McCain Courts the Autism Vote. Autism Street had McBain on Autism, Again. Both posts were up immediately after the debates.

From AutismStreet:

Sarah Palin knows about that better than most? We’ll find “the cause of autism”? It’s really a shame that a grown man doesn’t seem to have the appropriate judgment to reserve comment on issues for which he seems to have no specific knowledge. I mean really, several causes of autism are already known. It’s difficult to think this is not a simplistic, completely uniformed conclusion, formed by listening to those who promote the scientifically unfounded notion of an “autism epidemic”.

I’m sure his intentions are good, but in my opinion, ignorance does not deserve a vote.

ScienceBlogs bloggers chimed in: Respectful Insolence with Autism in the Presidential Debate?, and Thoughts from Kansas with McCain on Autism.

Respectful Insolence had, well, a respectfully insolent approach:

Was it just me, or did anyone else find it jarring when suddenly John McCain interjected special needs children and autism into the debate last night? As you may recall, a few months ago he was tripped up by the antivaccine fearmongers who think, despite an absence of scientifically compelling evidence supporting their view, that vaccines cause autism.

AutismVox discussed McCain and Obama Debate: Down Syndrome, Autism, Special Needs (a post with a big banner ad for the McCain/Palin campaign when I read it!). Kristina Chew (AutismVox) quoted non-autism blogger Andrew Sullivan’s post at The Atlantic, Special Needs. Andrew Sullivan’s post was quite short, and I hope he doesn’t mind me quoting it entirely here:

I was curious about McCain’s apparent conflation of Down Syndrome and autism. They are very different ways of being human, but they do come under the same umbrella of “special needs” according to Wiki.

That “…very different ways of being human…” comment was just a wonderful way to make the statement.

I expected the response to the debate to be divided amongst the autism blogs on vaccine/non-vaccine lines. Judging by the comments on some blogs, even the vaccines-cause-autism people weren’t happy with Senator McCain’s approach to autism. David Kirby came out with a blog post on the debate, Last Night’s Autism Debate — Who Will Win the Special Needs Vote? Wow, he missed the mark. In his effort to push the vaccine-autism notion, he totally missed the idea that lots of people on both sides of the vaccine question were unhappy with Senator McCain. I wonder if he read is fellow Huffington Post blogger Janet Grillo, My Autistic Son is Not a Political Pawn. It’s tough to read through the comments to the blog, as it devolved quickly into the usual “mercury causes autism” discussions that are old, tired and off-topic. That said, here is the top comment when I read the post (on Thursday afternoon):

As a mother with 2 Autistic boys it will be the Obama/Biden ticket hands down. Obama has had a plan posted on his site, specific to Autism, for some time now. It’s a real approach and concern not just a comment solely for a vote.

Even comments from “epidemic” minded people weren’t for Senator McCain:

Being the mother of a 10 year old autistic son, I have looked very closely at both candidates and their running mates, and questioned who would better handle the issues. Hands down it is Obama/Biden. Obama really is empathic about our epidemic and sees a need to fund some studies, to find out what is going on and how to help deal with it.

Frankly, I think people saw a lack of substance in Senator McCain’s comments. Yes, he mentioned autism, but autism parents have learned to read through comments that have no teeth. Anyone who has been through a couple of IEP’s knows the difference between, “We will work on that” and “Here is a measurable goal that we will work towards, and here are the resources we will apply to it.”

David Kirby seems unable to see that Senator McCain’s statements were pretty clearly not putting autism as a major focus, but, rather was trolling some carefully phrased statements in an attempt to curry favor with a constituency–without giving anything tangible in return. Either that, or it didn’t fit the message David Kirby was crafting.

Another comment from his blog:

I have an 11 year old with autism. While I’d love to know someday what caused it definitively (although in my opinion there’s a pretty clear genetic component – not a cause, but a component) I’m much more focused on making sure he has access to quality health care, educational and vocational opportunities. Obama’s plan has a focus on that as well as basic research.

The Obama camp seems to think Senator Obama did so well on this question that they blogged it too.

But, enough of the election.

Earlier in the week, there was much discussion about Measles. EpiWonk had an Op-Ed piece in the Atlanta Journal Constitution on MMR and Autism, followed by a blog post. That gathered responses from LeftBrainRightBrain, with a followup discussion of one of EpiWonk’s own papers on the effectiveness of the Hib vaccine.

LeftBrainRightBrain has an occasional guest blogger from the UK research community. He chimed in this week with a post on The Truth about Andrew Wakefield.

Denis Leary (I’ve got to admit, I’d never heard of him before) got some press for a book, part of which took issue with autism. Think of the recent comments by Michael Savage (whom I unfortunately had heard of), but in print. I won’t quote what he said, but you can read what Emily has to say about it at DaisyMayFattyPants, with Leery of Leary. Kristina at AutismVox took a look with Denis Leary does a Michael Savage. Marla Baltes chimed in with According to Dennis Leary, I am an inattentive mother and my child is stupid. It didn’t just get outrage from the autism community, as The Butterworth Group made clear in Denis Leary’s an A-hole.

A new face has entered the vaccine-autism-alternative-medicine debate. A Canadian Doctor named Moulden made comments about how autism (in his model) is caused by micro-vascular strokes, which, in turn, are caused by vaccines. The concept was given a Respectfully Insolent response in Vaccines cause “microvascular strokes” that cause autism? The idea and presentation by Dr. Moulder is bad enough to look like a parody. And, yet, I’ve seen discussion groups take him and his ideas quite seriously. It is depressing, really, to see such junk science taken seriously by families who might be spending time, money and emotion on this (reportedly delicensed) Doctor.

That’s so sad that it’s time to bring this back to where it started: did you see that Tito has a new blog post?

Instead, let me talk about an hour of Autism (yes, an entire hour, not just an interview/book-plug). Yes, there were celebrities: Joe Mantenga and Didi Conn.

http://autismlibrary.org/blog/wp-admin/post-new.php

In my book, Ari Brown is a bit of a celebrity…but I’m weird that way. GMA (Good Morning America) also had Ken Reibel (autism parent and journalist) and Dr. Lou Cooper (former head of the American Academy of Pediatrics).

The show was hosted by ABC news medical correspondent Dr. Timothy Johnson. The show was pretty good. No one shouting insults at others…none of what I’ve come to fear from talkshows about autism.

The show was split into six segments–here they are:

Segment 1: Autism Up Close (introducing the subject and the people)

Segment 2: Autism Stories from the Spotlight (where they get the parent’s stories)

Segment 3: More Stories from the Spotlight (more from the parent’s view)

Segment 4: The Autism-Vaccine debate (looking at “the elephant in the room”)

Segment 5: Treating Autism (without a long discussion of diets, antifungals, chelation…thank god)

Segment 6: Autism Advancements

A good set of videos for someone starting out and looking for some good information.

The crisis he is referring to is the very real financial meltdown in the world’s economy. This led to the collapse of Iceland’s banking system which, due to the high interest rates they were offering, caused many charities to lose considerable sums of money. The NAS is in good health, but the crunch is certainly going to be felt as these losses reverberate through the communities.

I’ve been meaning to put a page on the main site (autismlibrary.org) on charities. This prompted me to do so. I don’t know how much traffic this will drive towards the NAS, but I hope it does some good.

The other charities noted on that page are:

The St. Joseph’s Indian School, which serves Lakota (Sioux)

and

The Clinic for Special Children, which serves the Amish communities in Pennsylvania.

Both are small and very worthy causes.

The National Autistic Society promotes a very positive image of people with autism. I wish there were a version of it in the United States.