Archive | October, 2008

David Kirby clarifies?

31 Oct

David is obviously a reader of this blog or Autism Vox or Respectful Insolence as these are (so far as I know) the three blogs that commented on his claim that thimerosal was no longer the ‘smoking gun’ for autism causation. Here’s the quote from the New Jersey Star Ledger:

David Kirby, a journalist and author of “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy,” said he believed that thimerosal, which still exists in trace amounts in some childhood vaccines, was no longer the “smoking gun.” Several national studies have found no connection, and a California study found that, even after thimerosal was removed from vaccines, diagnoses of autism continued to rise.

Now that’s a pretty unequivocal statement. Even so, David felt the need to clarify on Age of Autism yesterday:

The term “smoking gun” comes from Sherlock Holmes…..[]….To this writer’s mind…….the term means the “one and only cause,”.

I do not believe that thimerosal is the one and only cause of autism.

Now I’m confused. In the quote from the New Jersey Star Ledger David says thimerosal is no longer the cause of autism. In his own quote on AoA he says it is. Here is the quote that uses the words ‘smoking gun’:

The triggers, as I mentioned, might include, unfortunately, everything, and when I wrote my book I was hopeful that maybe thimerosal was the smoking gun. And if we just got mercury out of vaccines, autism would rapidly reduce. And we haven’t seen that happen yet. But I did say if that does not happen then that’s bad news; now we’re back to square one. It would have been so much nicer, and easier, and cleaner to say, gosh, it was the mercury in the vaccines and now we can take it out and the case is closed. That didn’t happen, and we need to look at everything. And as I said, not only the individual vaccine ingredients, but also the cumulative effects of so many vaccines at once.

So, this then as people said to me, is not David saying ‘its not thiomersal’, its David saying its not just thimerosal.

I’m kind of saddened by this. As David himself says:

There has been so much debate over ‘What is THE cause?’ And for a long time in this country, we were fixated on thimerosal, the vaccine preservative, and I share some of the blame for that because my book focused mostly on thimerosal.

Fixated is the right word. Some of us over and over and over were constantly telling people it couldn’t possibly – based on the available data – be thimerosal. And yet this stopped no-one from saying it was. More importantly it stopped no one from chelating autistic kids needlessly for ‘mercury poisoning’ that didn’t actually exist.

David now officially joins with Jenny McCarthy and the new side of autism/vaccines. Its everything. Individual vaccines ingredients and the cumulative effects of so many vaccines at once. My question is why? What we have here is an instance where a hypotheses was tested and failed to be accurate. It took 10 years for people who believe David to get that message. Many still haven’t.

David also claims that his infamous claim about CDDS data in 2005 (that if the thiomersal hypothesis was correct CDDS rates would fall – they didn’t) failed to take into account key confounders –

1) Falling age of diagnosis
2) Thiomersal in the flu shot
3) Immigration
4) Rising levels of background mercury

With all due respect to David these are pretty shoddy. David asks if the caseload could’ve increased between 1995-96 due to recent falling age of diagnosis and aggressive early intervention. I’m not sure that 95-96 could really be considered recent.

As discussed by Do’C on Autism Street, the whole ‘mercury in flu shots’ thing is rather misleading:

…better than 90% of the 5 year olds in the relevant data set were not even vaccinated. Does the increase in flu shot uptake in this age group that occurred after 2003 even matter with respect to the California data? It doesn’t seem likely given that about 80% of kids in the relevant age group are not even vaccinated during the next couple of years. But aside from that, the ones who were vaccinated were decreasingly likely to receive a thimerosal containing flu shot at all.

I’m not sure what to make of the Immigration thing. It makes me feel a bit uncomfortable – its easy to blame ‘the outsiders’ but without any actual science (and I’m not of the opinion that running CDDS data through Excel is science, sorry) to back those beliefs up, it feels like an easy ‘out’.

This rising levels of background mercury thing puzzles me. It may well be happening. David didn’t source the three studies (I imagine one is the Palmer thing) but I don’t see what background mercury has to do with thiomersal? Maybe I’m missing the obvious here.

David went on to describe what mercury can do:

constriction of visual fields, impaired hearing, emotional disturbances, spastic movements, incontinence, groaning, shouting, dizziness, nausea, vomiting, diarrhea and constipation,” (HERE) (otherwise known as every afternoon at the Redwood house, circa 1998 in my book)

That may well be ‘every afternoon in the Redwood house’ but its never been any time of the day in my house. None, I repeat, none of the symptoms David lists form part of the DSM (IV). Whatever it was causing those symptoms every afternoon in the Redwood household, it had nothing to do with autism.

David closes by referring to a study published early this year. He says:

So, despite all the cries of innocence among mercury supporters, the California study authors insist that this trend has not been confirmed.

Not quite. Here’s the quote from the Medical News Today article:

They also cautioned that the evaluation of the trends needs to continue in order to confirm their findings for the children born more recently.

What they’re saying is that their conclusion for the data they’ve looked at is:

The DDS data do not show any recent decrease in autism in California despite the exclusion of more than trace levels of thimerosal from nearly all childhood vaccines. The DDS data do not support the hypothesis that exposure to thimerosal during childhood is a primary cause of autism.

but – quite reasonably – for children they haven’t looked at, they can’t speak for.

More presidential autism politics II

30 Oct

I’ve been watching (happily) the recent emergence of autism as a topic of the U.S. presidential race. Actually, it is the emergence of autism as a topic for the republicans, as Senator Obama has had a clear policy statement on autism and on disabilities in general.

Recently, I noted that the McCain/Palin ticket’s statements were not strong commitments, but more general statements of support. Since that time, Governor Palin has come out with some stronger statements so it is worth revisiting the subject.

The Pittsburgh Tribune Review notes that in a recent speech:

Palin proposed “fully funding” the Individuals with Disabilities Education Act, which the campaign later said would cost $45 billion over the next five years. Palin proposed gradually increasing the $11 billion spent annually on such programs to $26 billion — the amount experts say the programs actually cost.

(as an aside $26B is only the 40% share the Federal government is supposed to be paying.)

But, back to the main theme–this is really good to hear. Whatever happens next Tuesday, Sara Palin, John McCain, Barack Obama and Joe Biden will be people of importance. The more of them that make commitments to support people with disabilities the better.

So, for that I thank Ms. Palin. I am pleased to see commitments firming up–they were very soft in the beginning.

I’d still like to see more. First, I’d like to see Mr. McCain pick up this theme. Yes, I know that they are trying to use this to help define Gov. Palin, but I’d like to hear Senator McCain commit to fully funding IDEA (as a part of a bigger disability platform). I’d love to hear him say that even if he remains a senator in a week, he’ll support fully funding IDEA.

But, let’s look again at the speech: here’s a paragraph from the Washington Post on this same speech:

In her speech, Palin said the federal government could finance the new investment by taking some of $18 billion it spends each year on earmarks, specific projects that are designated by members of Congress.

Let’s take a look at what the above means:

The President and the Vice President don’t have the power to pull earmarks out of bills. If fully funding IDEA is tied to reducing earmarks, it isn’t a commitment that she or Mr. McCain would have the power to enforce.

I don’t want to hear in a couple of years, “Well, we’d fund IDEA if congress would stop putting earmarks into bills.” I want to hear, “We increased the level of funding for IDEA in the budget we sent to congress. Further, we are going to fight them if they cut it.”

As election day nears, the pressure on the candidates gets greater. The McCain-Palin ticket has already responded by making their statements more firm. But, this isn’t the time to accept a weak commitment–we need to push them to do more.

Let Governor Palin and Senator McCain know: thank you very much. Sincerely, we thank you. But, please, take the time in this last week to make a firm commitment to funding IDEA. Also, IDEA is a great first step but, please, expand your disabilities policy to include more (like supports for adults, or whatever issues are big for you).

The McCain-Palin ticket has a contact form right on their website. So does Obama-Biden.

David Kirby – Thimerosal does not cause autism

29 Oct

In something of a jaw-on-chest admission, David has finally admitted that thimerosal does not cause autism:

David Kirby, a journalist and author of “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy,” said he believed that thimerosal, which still exists in trace amounts in some childhood vaccines, was no longer the “smoking gun.” Several national studies have found no connection, and a California study found that, even after thimerosal was removed from vaccines, diagnoses of autism continued to rise.

I would go on to say then that the claim that mercury in vaccines ever caused a never-established autism ‘epidemic’ needs to be retracted also. I would further like to see David (who has appeared on TV, Radio and in the press speaking as if thimerosal was definitely the cause) question his previous belief that this was ever a medical controversy.

We need to be clear on this issue. In the US, the idea that mercury in vaccines cause autism is the reason so many parents are not vaccinating their children. David was the chief media spokesperson in this belief and whilst it is gratifying to hear him publicly admit thimerosal does not cause autism – it needs to be proclaimed widely and David needs be much more public than this.

However, its not all good.

But, he said, the links between vaccines and conditions like autism are still strong and more research is needed.

Conditions like autism or autism?

David seems to have moved from targetting thimerosal to simply targeting vaccines in general. Contrary to his statement that there are strong links between autism and vaccines, the fact is that there are none. No decent science supports this hypotheses and (with apologies to David) he has a now self-admittedly bad track record when talking about ‘strong links’ between vaccines and autism. David’s ‘strong link‘ between thiomersal and autism was CDDS data and we all know how that one turned out. I’d ask David to please consider very carefully his ideas about ‘strong links’ of today turning around to bite him in the future. Does international public health really need another three/four year gambol through the wilderness based on a non scientific ‘strong link’ which in reality is simply an opinion?

We all know the recent makeover the vaccine hypotheses has been getting. Generation Rescue now no longer claim that autism is simply mercury poisoning for which the cure is two years chelation resulting in a child 100% neurotypical, no different from their peers. SafeMinds – an organisation dedicated to Mercury in their very name – attack MMR, a vaccine that has never contained mercury. Jenny McCarthy is now on board and gives credence to the idea that an average parent (such as myself) knows more about the sciences of medicine, epidemiology, toxicology etc etc than specialists who have spent years in their field. Whilst at the same time Ms McCarthy simply cannot keep her story straight about incidents from her book or even when her son was recovered or not.

The inconsistencies mount and mount and whilst I am glad that David has admitted the non-role of thimerosal in autism causation this is simply the tip of the iceberg. Are Generation Rescue, SafeMinds, NAA, TreatingAutism, A-CHAMP queuing up to admit the same? Are these same organisation prepared to go back onto the same TV/Radio stations they first proudly proclaimed they knew the cause and had the cure and admit they were wrong? Or will it all continue to be held behind the Emerald City of the new ‘Green Our vaccines where we are urged to never, ever look behind the curtain in case we see the simple, obvious truth about the grand machinations?

Jenny McCarthy: a tale of two tales

28 Oct

I love public libraries. Always have. Sometimes I go a long time without stepping in one, but once I do, I love them all over. I love leaving with a huge stack of children’s books and reading them over and over (and over and over) to my kids.

I went to the library last nigh. Dropped off some overdue books and picked up “Mother Warriors”, Jenny McCarthy’s latest.

No, I didn’t read it all in one sitting. But, I did read some sections that have interested me. If you recall, I blogged recently about Jenny McCarthy’s interview where she talked about her interactions with Barbara Walters on “The View”.

At the time, my focus was on the fact that Jenny McCarthy waited over a year to talk about her story of the behind-the-scenes events of her interactions with Ms. Walters. Silly me, I didn’t realize that not only was she saving that story to create buzz for her book, but that the story was a part of the book. But, let’s see what I wrote then:

Story line two: Let’s go all the way back to September, 2007. Jenny McCarthy is on “The View” for her first autism-book tour. Barbara Walters committed a terrible “sin”: she actually treated it like an interview and questioned Jenny McCarthy. I’d like to show you the video, but the video is now pulled from YouTube and the link to the video from the more recent story (which included the bit from “The View” also doesn’t seem to work anymore.)

Some short time after taping “The View” Ms. McCarthy was at a TACA picnic where she is said to have made some rather rude suggestions towards Ms. Walters.

Fast-forward to the present. On September 29th, Ms. McCarthy “forgave” Barbara Walters.

No, really. After Ms. McCarthy got a bit cross on the show and then took it out on Barbara Walters at the TACA picnic, she “forgives” Barbara Walters.

Boggles the mind, doesn’t it?

In that same interview, according to Ms. McCarthy (and only according to her, since Ms. Walters seems above responding to this), there was a bit of a heated exchange backstage with Ms. Walters after taping “The View”. Ms. McCarthy gives no indication of whether she (Ms. McCarthy) lost her cool at all.

You can imagine that when I saw chapters on Barbara Walters in the new book, I had to read them.

In “Mother Warriors”, Jenny McCarthy tells about how before she went on the The View, “a girl” who worked for the show came to Jenny’s dressing room and told her that Barbara Walters got a call from someone at ABC who said that the treatment that Ms. McCarthy was talking about was B.S.. Jenny got called in to talk to Ms. Walters before the show, and, according to Ms. McCarthy, the exchange was somewhat heated and Ms. Walters told Jenny how to answer a question that would come up in the interview. (“The answer is YES, most doctors do not agree with anything you are saying”).

So, Jenny McCarthy went on anyway and, as the title of the book says, “Against All Odds”, told her story and stood her ground.

The chapter finishes with:

Barbara tried her best to ruffle my feathers during the rest of the interview but I stayed focused, stayed within my heart chakra, and just stuck to my story.

The show was over and as I left The View that morning, all I could think was, “I could really use a big hug from Oprah right now.”

Damned good drama.

Anyone else remember “Two Minute Mysteries”? I loved those books as a kid. Every story was told with one little detail that allowed the inspector to see that someone wasn’t telling a consistent story. Did you catch this one? Take a look at what I wrote in my previous blog…this time with some emphasis:

In that same interview, according to Ms. McCarthy (and only according to her, since Ms. Walters seems above responding to this), there was a bit of a heated exchange backstage with Ms. Walters after taping “The View”. Ms. McCarthy gives no indication of whether she (Ms. McCarthy) lost her cool at all.

Yep, in the interview Ms. McCarthy recently gave, the heated exchange came after the interview on The View, but in the book, it came before the interview.

I’d love to show that video—but as noted, it was pulled.

So, it’s Sullivan’s word alone. My “anecdote”. Or, is it?

When the video came out, Jenny McCarthy’s organization plugged it on their blog, the Age of Autism. Let’s take a look at what they had to say, with a little emphasis added by me:

Jenny McCarthy on Access Hollywood

Access Hollywood talks to Jenny McCarthy about her heated dressing down by Barbara Walters after she was on The View during her promotion for Louder Than Words. Jenny explains that she didn’t understand where Barbara’s anger and refusal to believe Evan was in recovery, was coming from, until she learned that Ms. Walters had a sister with special needs.

…

There’s no embed code, but you can click to the Access Hollywood on the OMG! site HERE.
http://omg.yahoo.com/videos/barbara-walters-jenny-mccarthy-feud-resolved/5446

Anyone want to venture a guess as to why the video interview in that last link was pulled from the OMG site?

This is not a minor, “look, there’s a mistake in Jenny’s book” issue. At least one of Jenny McCarthy’s stories about the events of that day are wrong. And, in the end, I think I need Barbara Walters and people like her. What I don’t need are autism “advocates” who tell inconsistent stories that could serve to alienate the press from the “autism community”.

But, this also serves as an example of anecdotes and memory. The events on The View were, by Jenny McCarthy’s account, rather traumatic. She tells in her story about how her mother always wanted Jenny to someday be on one of Barbara Walter’s specials, and how that dream was shattered. Jenny McCarthy wrote about her side of the events in her book. And, yet, when she was interviewed, she told a different story.

Why do I think this is important? Take a look at another quote from the book. This is what Ms. McCarthy relates as her thoughts after Oprah Winfrey read the statement from the CDC (that there is no science to support the connection between vaccines and autism) during the “Louder than Words” book tour:

“Who needs science when I’m witnessing it every day in my own home? I watched it happen.”

There is an excellent discussion going on at AutismStreet about anecdotal evidence. Prometheus made some good comments, one of which I quote here:

In science, anecdotes are a form of data, albeit of the lowest quality. A series of consistent anecdotes can be used to construct a hypothesis, which can then be tested by experimental means.

The anecdotes from Ms. McCarthy give a good example of why anecdotes are the “lowest quality” form of data. Her stories just do not jive.

Rethinking Expertise II

25 Oct

Recenty, I discussed a new book, Rethinking Expertise. The author took the position that there is a danger in the idea that everyone can be an expert on anything–all that is needed is an internet connection.

What I found most troublesome was the idea that “vaccine scares” were used as a prime example of this false expertise. At the time, I assumed that the author likely meant the autism/vaccine link.

The author, Harry Collins of Cardiff University, was recently interviewed by Ira Flatow of Science Friday. You an listen to the interview on the Science Friday website (or download from there).

In the interview, he specifically mentions the Wakefield/MMR scare.

The autism community is being used as a big example of the dangers of false-expertise. Not a good sign.

Sometimes the HuffPo gets it almost right

25 Oct

Regular readers will know of my concern regarding the HuffingtonPost and its clear antivax agenda. Kim Stagliano, David Kirby and (I think) Barbara Loe Fischer post there and whilst I don’t believe David has an antivax belief, I do think he is unfortunately promoting unfounded statements that feed antivax talking points (eg the claim HHS conceded vaccines caused Hannah Polings autism).

However, I was really pleased to see a post today in my Google Alerts from HuffPo that got it 95% right. Before I say why I have to clarify once again my position as a UK citizen and therefore my belief that I really shouldn’t take a position on the upcoming US elections. However, thats becoming increasingly difficult to do as I read such monumentally stupid things from McCain as:

[Sarah Palin knows]…more about autism then anyone I know…

Which I take to mean that the only person he knows with a connection to autism is Sarah Palin. Also his confused and pretty desperate looking pandering to the antivax crowd is downright annoying. But anyway.

The HuffPo post I’m referring to is Obama and autism by Elaine Hall. She describes:

Neal is my resident expert on autism. Now 14 years old, Neal was adopted from a Russian Orphanage at 23 months, and diagnosed with severe autism at age 3 . Neal is non verbal (or as we prefer to refer to him “a man of few words”) so when he speaks his truth through typing – WE LISTEN.

Me like.

Last January at one of his sessions with Darlene she asked, “”So, Neal, what have you been thinking about lately?”

“The Elections,” he typed on his Alpha Smart keyboard.

“What about the elections?” asked Darlene.

“I’m for Obama, he typed.”

“Obama? Why?”

“Obama is for Autism, ” he finished.

That evening my husband and I Googled Obama and Autism. And there it was, pages and pages from people with autism. Supporting Obama.

Me like even more.

This tells me a number of things. First it tells me that Elaine Hall and her partner are smart enough to see their autistic son as the resident autism expert. What a refreshing attitude. Second it tells me that when their expert speaks – THEY LISTEN. Also a refreshing attitude. Thirdly it tells me that someone being non-verbal does not mean they cannot communicate. I can think of more than a few people who read this blog who need that lesson drummed into their heads. Fourthly, it tells me that autistic people by and large support Obama. This means (for whatever the opinion of a non-voting Brit is worth) that I’m for Obama too.

Now, I said at the start of this piece that HuffPo only got it 95% right. They would’ve got it 100% right if they’d let Neal do the typing. However, he is only 14 and maybe thats why he’s not contributing publicly just yet. For now, I’m more than happy to read Elaine Hall’s words. This is from the front page of her website The Miracle Project:

The Miracle Project is a theatre and film arts program for children with special needs and their typically developing siblings and peers. Our mission is to provide a loving, accepting nurturing environment which celebrates and honors the unique and often unrecognized talents of these young people by guiding them through creative workshops and artistic programs.

Thank you Elaine Hall and thank you Neal. I’ll be looking out for more from both of you.

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Story Time With Darwin

24 Oct

When Autism’s False Prophets hit the shelves–heck even before–there was a lot of buzz in the online community. Lot’s of reviews were posted on blogs. There seemed to be a strong correlation between people who actually read the book and people who favorably reviewed the book. AFP was chosen for the Science Blogs Book Club.

There have been a lot of approaches to discussing Autism’s False Prophets online, but I don’t think I would have ever predicted this:

Darwin-AFP Introduction

Yep, someone (not just someone, and autistic adult) reading from Autism’s False Prophets.

I saw that video and thought, “AFP isn’t a really long book, but there’s no way that this guy can cover much of the book.”

I underestimated the will and stamina of Darwin. He has 59 videos up. He’s at least to chapter 8.

Here’s a “commercial” for the YouTube series. You gotta click on this one. It’s short, and made me laugh out loud.

Darwin-AFP commercial

Note: I’m having a little trouble embedding the YouTube videos. I hope to figure that out soon.

More presidential autism politics

23 Oct

I don’t know how things work in the U.K., but in the U.S. there is a long tradition of giving the Vice President a special role. The VP gets to say the the controversial things the president wants to try as a “Trial Balloon”.

You see, people in America vote against candidates as much or more as the vote for candidates. Every time a candidate opens his or her mouth with a clear statement, he turns some people off. If Candidate X says, “I’m all for fresh tomatoes” the people whose lives revolve around canned tomatoes immediately want to vote for Candidate Y. (to use a silly example).

The reverse doesn’t work. Candidate X may not really collect as many “Fresh Tomato” voters as he lost other voters.

Take a look at the early polls for any office. Often you will see something like, “Well, if McCain runs against Clinton, he is shown to lead by 5%, but against an un-named democrat, he would lose by 5%”.

American’s love hypothetical “un-named” candidates. We don’t have anything to hate.

That’s where the VP comes in. The VP can say the more controversial things. Americans who like the idea will say, “Dang, that team is doing what I want!”. Conversely, others will say, “Well, I hate the VP, but I vote for the president”.

See how that works?

Well, I bet you know that I’m getting around to the McCain/Autism question. Since the debate, he’s pushed the idea more. The title of a recent interview with the VP candidate Sara Palin tells a lot: Palin advocates for children with autism, no plan specifics.

Ms. Palin addressed issues brought up by Mr. Obama in the recent debate: how to fund autism research and have an across the board spending freeze. Ms. Palin noted:

“We want to give every child a chance,” Palin told News 4’s Shelby Sheehan in an exclusive interview during a campaign stop in Reno on Tuesday.

Palin’s running mate John McCain said in the third and final presidential debate, “We must find out the cause of autism and help those families dealing with autism.” McCain also promised to freeze all unnecessary spending in the federal budget.

Palin says it’s possible to do both.

For the moment, let’s compare this to what Mr. McCain said at the debate:

OK, what — what would I cut? I would have, first of all, across-the-board spending freeze, OK? Some people say that’s a hatchet. That’s a hatchet, and then I would get out a scalpel, OK?

Notice that the current statement is “unnecessary” spending now, but it was all spending a week ago?

Also in the debate, Mr. McCain said:

The mayor of New York, Mayor Bloomberg, just imposed an across- the-board spending freeze on New York City. They’re doing it all over America because they have to. Because they have to balance their budgets. I will balance our budgets and I will get them and I will…

So, a few days ago, it was an across-the-board spending freeze, with extra cuts via scalpel. Now, autism is going to get extra funding by diverting funds cut from other programs.

“There are a lot of wasteful expenditures in the federal (government),” Palin said. “Let’s get rid of those and put them into strengthening NIH (National Institutes of Health) and these other areas where we can help our kids with autism.”

Palin did not name any specific expenditure she wanted to cut in favor of funding for autism research or services, nor did she name what specific programs she’d like to fund in order to help those families.

That sounds good. But, that is a VP message and it doesn’t have any firm commitments.

The McCain campaign also talked about autism in an interview on FoxNews. The interview was with Cindy McCain, John McCain’s wife (and potential first lady). She noted:

…you know, obviously, autism has been on his agenda for a while.

But, again, not much of a commitment. And, it’s too similar to a VP comment.

Well, if these are trial balloons–here’s a respnse: Mr. McCain, I think it’s great that you have autism on your agenda. Either as president or as a senator, you will be in a great position to really help out. But, when I search your website for “autism” I get one hit:

Need to find out what the cause of autism is. We have to put a brake on increasing incidence of autism in America. That has to be highest priority. This will place a very dramatically increased burden on special education programs. I would fully fund special education program but also make sure teachers don’t just put discipline problems in those programs, that screening is a little more conscientious.

Now, I’m pretty sure I’ve seen more on your site in the past–I need to look harder. But it wasn’t much.

I like the suggestion above that you will fully fund special ed. Does this mean having the Federal Government fully fund IDEA? Because, that would be an increase in spending. An increase in spending to finally reach the level promised to special ed kids for decades, but an increase in budget terms.

That statement was a little too vague, and you made it before the “spending freeze” idea was a big part of your plan.

I guess what I’m saying here is: I want you, Presidential Candidate John McCain, to say, “I will support an increase in IDEA spending to match the commitment we have made as a people”. I’d like it if you said that would be a priority even if you remain a senator.

You see, I’ve been to enough IEP meetings to understand what a measurable goal is. I realize the difference between a vague commitment and hard goal.

I want something I can quote and fax and email to your office (be it White House or Senate) and say, “what is happening with this?”

I am not a one-issue voter. But, this is an issue I am watching closely. How it is handled will tell a lot about the type of President you might be. A candidate who offers vague promises is not what I want, on any issue.

As I said, I found scant information on autism on your website. Here are links from Mr. Obama’s website:

Here’s a statement on Autism Spectrum Disorders. Yes, I want Senator Obama to tighten up this language:

Obama is a strong supporter of the Individuals with Disabilities Education Act (IDEA) and supports full federal funding of the law to truly ensure that no child is left behind.

Luckily, elsewhere on his website, he says,

They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind.

And also,

President Obama will fully fund the Combating Autism Act

Those are real statements. They are something measurable. They call out the specific projects by real name and they don’t just “support”, they say “fully fund”.

I will ad that I like the fact that autism isn’t a single issue to Mr. Obama’s campaign. It is part of a broader policy on disabilities.

Now, I am old enough to know that promises made and promises kept are different things entirely. But, as I’ve said above, when I call your office in a year, I’d like to have something substantial to quote to hold you accountable. I don’t want to call and have this conversation:

Sullivan: You said you’d support funding IDEA.
President McCain’s staffer: Of course we support that!

So, a few suggestions (for both sides).

1) Make real commitments
2) Have the presidential candidate say them (not the VP, not a spouse)

but, mostly

3) Follow through.

We as a community have seen promises un-kept since long before I was a member. Don’t promise what you can’t keep. Not to us. Tell the trial lawyers, the oil companies, other groups things that you may or may not be able to actually accomplish. Don’t do that to people with disabilities.

Memo to Bob and Suzanne Wright

22 Oct

Bob, Suzanne – welcome to the UK.

I read your interview in the Telegraph. Fascinating. I’d like to highlight a few points.

“We want the best minds in the world to focus on this,” says Wright. “And we want the UK to be a big player in the global movement.”

“Until now it seems to have passed under your radar,” adds Suzanne – a statement that could anger all the British activists who have been working in the field for decades.

Um yes, just a bit. You see, in the UK, we already have some of the best minds ‘working on this’.

And ‘passed under our radar’? One could assume that Suzanne Wright has a monumental gift for saying stupid things after reading that. Maybe she hasn’t heard of the National Autistic Society a parent founded organisation formed over 40 years ago in 1962. Maybe she hasn’t heard of it because it doesn’t cry about ‘the children’ all the time and because it recognises the fact that autistic people have a voice (no autistic people are on AS board whereas autistic people are represented at many levels of NAS) and are – in the main – adults and it tailors its aim appropriately. Whilst NAS is far from perfect it has learnt the necessity to respect autistic people for the fact that they are autistic. Something the Wrights aren’t even close to. If the Wrights want to get any traction in the UK they need to shut their mouths and listen to NAS.

And then the anti-vax rhetoric starts, giving lie to the idea that AS are pro-vaccine.

….The last vaccine Christian had before he regressed was MMR – that’s why my daughter concentrates on that. I don’t know whether his autism is linked: it was certainly coincidental, what we don’t know is if it was causal. Nor do we know whether the thimerosal (the mercury-based preservative used in vaccines) is a factor, although mercury is clearly poisonous. Governments want to run from that issue but they should become more aggressively involved. They have to follow children through to see if there are any effects.

Well Bob actually we do know if his MMR shot was causal. It wasn’t. We also do know if thiomersal is a factor. It isn’t.

I personally haven’t seen a government ‘running from the issue’. I’ve seen government spokespeople repeat what science tells us. There is no link. No matter how much people think there is or believe there is, based on the available evidence, there isn’t. Science has followed through to see if there were any effects. There weren’t. How much clearer does it need to be Bob?

Virginia Bovill perfectly sums up my own concerns about you and your wife’s organisation:

The other major source of concern is Wright’s focus on prevention and cure. This upsets Virginia Bovill, founder of TreeHouse, the charity hosting the lecture, who is currently studying for a DPhil on whether the quest to prevent and cure autism is morally justified. “Where would prevention lead – to ante-natal testing and abortion?” she asks. “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here – how can we help these children fulfil their potential; how can we support their parents?'”

This is a very British pragmatism. The issue is right here and needs to be addressed. Do you want to help or do you want to force through your own beliefs simply because they are your beliefs? If the latter please just hop back on the plane. We don’t want you here.

Every Child By Two: Oprah, Jenny McCarthy et al

20 Oct

An email from Amy Pisani – a thoroughly charming lady who runs the organisation Every Child By Two – made me nod appreciatively today. I’ll quote it in full:

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.

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

An excellent idea. I’d like to see a show that mirrors the one sided show that Jenny McCarthy recently got – the one where she was free to spout off her latest game of ‘cure the Evan‘ (he’s cured, no he’s not, yes he is….) but this time with a careful step by step walk through the science that:

…is largely complete. Ten epidemiological studies [plus two clinical ones and the testimony of Stephen Bustin] have shown MMR doesn’t cause autism; six have shown thimerosal doesn’t cause autism; three have shown thimerosal doesn’t cause subtle neurological problems; a growing body of evidence now points to the genes that are linked to autism; and despite the removal of thimerosal from vaccines in 2001 [and the 10% drop in MMR uptake between 1997-2007], the number of children with continues to rise.

– Autism’s False Prophets, Page 247. Dr Paul Offit.

Compare this hard, clinical, transparent (and thus independent) science with Mother Warrior Jenny McCarthy’s recent evangelical call to arms:

“I made a deal with God,” she explains. “I said, ‘You fix my boy, you show me the way and I’ll teach the world how I did it.'”

Hallelujah! Or whatever. To misquote the Pythons – she’s not the Messiah, she’s just a very silly girl.

Please act on Amy Pisani’s request – do it right now.

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