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IACC Plan has no vaccines, Alison Singer resigns from Autism Speaks

16 Jan

There was just no way I could listen in to the last IACC meeting. I have been keeping up with all the meetings, but yesterday it was not to be.

I knew it was going to be big, but it was way big. David Kirby tipped the hand when he blogged about how the Strategic Plan was going to include vaccine related research. Strange move–why blog about it before it was set in stone? Why not blog about it right after the December meeting when the language was discussed? A suspicious person would think that Mr. Kirby got wind that the vaccine language was in danger.

And, so it was. Here is a press release:

ALISON SINGER ANNOUNCES HER RESIGNATION AS EXECUTIVE VICE PRESIDENT OF AUTISM SPEAKS

Disagreement on Vaccine Research Prompts Departure

NEW YORK, NY (January 15, 2009) – Alison Tepper Singer, executive vice
president of communications and awareness for Autism Speaks, today
announced that she has resigned from her position with the advocacy
organization, effective next month.

“It has been an honor and a pleasure to help to build this
organization into the preeminent autism advocacy group — the group
that has, in fact, elevated the word “autism” to the global
vocabulary,” said Singer. “I am grateful to Autism Speaks founders Bob
and Suzanne Wright for their leadership, insight, commitment and for
the tremendous support and love they have shown to my family and me.”

“However, for some time I have had concerns about Autism Speaks’
policy on vaccine research. Dozens of credible scientific studies have
exonerated vaccines as a cause of autism. I believe we must devote
limited funding to more promising areas of autism research.”

Singer resigned prior to the January 14th Interagency Autism
Coordinating Committee (IACC) meeting, at which the discussion of
vaccine research was to be continued from the December meeting, at the
request of one of the public members. Knowing she might cast a vote
with which Autism Speaks might disagree, she resigned from Autism
Speaks prior to the meeting. Singer serves as a public member of the
IACC and will continue to serve until 2011. She was appointed to the
IACC by outgoing HHS Secretary Michael Leavitt in 2007.

The IACC, created via the Combating Autism Act of 2006, is responsible
for coordinating all efforts within the Department of Health and Human
Services (HHS) concerning autism spectrum disorder, including drafting
a Strategic Plan for autism research with budgetary requirements. At
the January meeing, the IACC voted to seek input on two proposed
studies of vaccines and autism from the National Vaccine Advisory
Committee Safey Working Group (NVAC), an HHS group specifically
charged with undertaking and coordinating scientific review of the
federal vaccine safety system, prior to including the proposals as
specific objectives in the strategic plan. Singer voted in favor of
this motion.

Singer was the first professional hired by Autism Speaks when it
launched in 2005. She served as interim CEO for three months, then as
senior vice president and later as executive vice president. She also
served as a staff member of the board of directors until her
resignation. Singer has been responsible for directing the
organization’s award-winning awareness and strategic communications
programs, including its work with the Ad Council which was awarded
aprestigious “Effie” award in 2008 in recognition of the 43 percent
increase in overall autism awareness directly attributable to the
campaign. She also serves on the Executive Committee of the YaleChild
Study Center and on the board of directors of Autism Spectrum News, as
well as on numerous state and local autism advocacy committees. She
has appeared on Oprah, The Apprentice, NBC Nightly News, Good Morning
America, CBS Early Show and numerous other news programs discussing
autism issues.

“My work with Autism Speaks and within the advocacy community has been
exceptionally rewarding, and I will continue to advocate on behalf of
my daughter, my brother and the millions of others affected by autism
spectrum disorder,” said Singer.

Autism Speaks has its own press release.

NEW YORK, NY (January 15, 2009) – Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December — would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

IACC met yesterday at the NIMH in Bethesda, MD, to finalize the Strategic Plan. As mandated by the Combating Autism Act of 2006, IACC must develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder (ASD) research, including proposed budgetary requirements.

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

Five of the six public members voted against this revision. Autism Speaks Executive Vice President Alison Tepper Singer was the sole public member to cast a vote in support. The evening prior to the vote, Singer submitted her resignation to Autism Speaks – which was accepted – based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks’ position on this issue. Thus, in casting votes on January 14, she was acting as an individual public member of IACC and no longer as a representative of Autism Speaks.

“We are hopeful that the new administration will fulfill the intent of the Combating Autism Act and truly value and respect the input of the autism community,” added Wright. “It is imperative that we move forward and ensure that there is a Strategic Plan that meets the needs of the autism community. Autism Speaks is committed to being part of that process.”

Wow.

I have to point out something rather odd in the Autism Speaks version. Note that they claim

“The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December — would be revisited”

This is given as the reason why they are withdrawing their support for the Plan, by the way.

Why point this out? How did Alison Singer know the night before to resign if there was no forewarning? How did Autism Speaks accept the resignation if there was no forewarning? And, in the speculation realm, why did David Kirby blog about the vaccine provisions if there was no idea that those provisions were in danger? As I noted above, the natural time to blog it was right after the December IACC meeting, but he delayed for some time. Come on, Autism Speaks. Admit it, you are pulling support because you wanted vaccine language, not because this was a surprise.

It took guts to do what Ms. Singer did. I know I can expect comments pointing back to the Autism Speaks video that Ms. Singer participated in, but I’d like to stress: it took a lot of guts to do what she did.

Oh yeah, Autism Speaks: You don’t speak for the “autism community” any more than Generation Rescue does. You certainly don’t speak for me on this issue.

Twitter Users
You can tweet your feelings about this issue at a dedicated debate site.

The Guardian – purveyors of bad science

14 Jan

I’ve watched for awhile as the UK media whips itself up into a frenzy over the latest bit of autism research from Simon Baron-Cohen. I wanted to see if they could manage to curb themselves and their tendency to reduce everything to soundbite. Of course they couldn’t. The idea they could is silly.

However, call me an old Lefty but I thought The Guardian might do a little better than it has. It not only started this silly pre-natal testing storm-in-a-teacup, it continues to push it in the most credulous way.

On 12th Jan Sarah Boseley (apparently a Health Editor) wrote:

New research brings autism screening closer to reality

A piece that says:

New research published today will bring prenatal testing for autism significantly closer…

This is twaddle. And yet, The Guardian published an op-ed piece (well, blog post) today from Marcel Berlins which leads with:

The prospect of a screening test on a pregnant woman predicting her child’s autism is not far away, and Professor Simon Baron-Cohen, leader of the Cambridge University research team that developed the test…

Again, twaddle. And twaddle on two fronts.

Here’s the truth stated simply: Baron-Cohen’s work is not going to speed up a pre-natal test for autism. Baron-Cohen did not develop any test.

In a piece in Nature, Baron-Cohen explains:

The Guardian [newspaper] is focusing on the issue of screening. The study is not about screening and it is not motivated by trying to develop the screening test. It was motivated by trying to understand possible causal factors in autism…

So not only is Baron-Cohen _not_ developing a pre-natal test, he is quite clear that his work _will not_ speed up the development of a pre-natal test.

And yet two prominent Guardian columnists are writing as if it was a done deal.

In fact, the misrepresentation of the science involved goes beyond the surface of what Baron-Cohen is _not_ doing but what his work _is_ doing. From the NHS website:

The findings are based on a scientific study of 235 children aged between eight and 10, whose mothers had amniocentesis, a test analysing fluid taken from around a foetus. None of these children were autistic, but those exposed to higher testosterone levels showed higher levels of ‘autistic traits’, such as poor verbal and social skills.

So, lets be clear, *none of the kids in this study were autistic* – so touting this study as a potential shortcut to a pre-natal test is several steps ahead of itself.

The study itself was in undergone to further test Baron-Cohen’s theory that autism is an ‘extreme male brain’ disorder. It is worth remembering that this theory is contentious even within the mainstream autism science community.

Psychologist Kate Plaisted Grant, also from the University of Cambridge…isn’t convinced that the findings support the underlying theory. “The broader scientific community hasn’t accepted the idea of the extreme male brain,” she says. Fetal testosterone “may create a special brain, but it doesn’t necessarily create a male brain”.

Psychiatrist Laurent Mottron…says that just because males and people with autistic disorders score similarly in autism questionnaires, this does not mean that autistic traits are the same as male traits. Rather, he argues, it just shows that the test cannot discriminate between maleness and autism.

“For me, it’s exactly the same as saying that two things that weigh the same are both made of the same stuff,” he explains.

There is also the distinct possibility that autistic women have not been counted accurately in the past. I know I have read some research on this but I cannot put my hands on it. Maybe someone in the comments can help me out.

The Guardian need to take a step back and screw their collective heads back on. There should be a debate about pre-natal testing for autism but to me, its not a debate to have until it becomes a realistic possibility. The autism community has enough on its plate right now without getting into a purely theoretical debate.

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Paul Offit in the New York Times

13 Jan

Paul Offit is in the NYT today talking about his book:

A new book defending vaccines, written by a doctor infuriated at the claim that they cause autism, is galvanizing a backlash against the antivaccine movement in the United States.

which is true. For the first time in the nearly six years I’ve been blogging about autism and vaccines, things are happening beyond the stale, jargon filled denouncements appended to the end of news pieces about autism and vaccines. Doctors in the US and UK are wising up to the very real health dangers – and dangers posed to autism research – posed by the antivaccine/autism lobby. I’ve seen health experts on TV over here, read many interviews with actual doctors and scientists in both countries and am aware of plans to carry the message much, much further and harder than ever before. Its about time.

Offit again mentions the threats he’s received and Dr. Gregory A. Poland mentions threats his kids, something that Offit has also received, as have I and several other autism parents who don’t believe vaccines cause autism. Some scoff at that according to the NYT article. I would suggest that that displays a level of arrogance and head-burying that is unhealthy.

However, I think some of the scientists involved are naive or simply don’t understand the level of blind fanaticism they are dealing with:

If the surgeon general or the secretary of health or the head of the C.D.C. would come out and make a really strong statement on this, I think the whole thing would go away,” said Dr. Peter J. Hotez, president of the Sabin Vaccine Institute, who has a severely autistic daughter…

With respect to Dr Hotez, thats living in a fantasy world. What would happen is that certain factions would simply do what they try to do to Dr Offit, Dr Poland, Dr Shattuck, him (if he knew it), me, Kathleen, Kristina, Amanda, Orac, Joseph, Do’C (the list goes ever on) and now Josh and Ben from Change.org – they would suggest that the Surgeon General had become a pharma shill. They would wheel out the same tired old statements from ex-heads of NIH etc, people who have no relevance and no ideas and the whole thing would just go around and around.

To be 100% honest, the best thing to do with these people is buy them an island somewhere, transport them to it and let them live out their lives totally organically and naturally. Two birds, one stone.

But seriously, you will never, ever get through to these people. They cannot be reasoned with. To quote Lord Byron:

Those who will not reason are bigots, those who cannot are fools, and those who dare not are slaves.

Leading members of Generation Rescue are quoted in the piece:

We have hundreds of fully recovered children. I’m very frustrated that Dr. Offit, who’s never treated an autistic child, is spending his time trying to refute the reality of biomedical recovery.

He…condemned threats generally, saying he had received some himself. “No one should ever do that to another human being,” he said.

This is a constant source of puzzlement to me as I keep hearing about these ‘hundreds of full recovered children’ (didn’t it used to be thousands?) and yet a search of PubMed for these case studies show nothing at all.

So where are they? Much like David Kirby with his claim HHS have said vaccines caused Hannah Poling’s autism when they have not, this is yet another soundbite with no substance at all to back it up. How long can one keep making such wild claims without a shred of evidence to support them? How long before one’s own conscience starts to trouble you?

Many doctors now argue that reporters should treat the antivaccine lobby with the same indifference they do Holocaust deniers, AIDS deniers and those claiming to have proof that NASA faked the Moon landings.

I agree. But whilst we live in a society that thinks Jenny McCarthy is capable of offering medical advice and the media love celebs more than people it ain’t going to happen. Medical science needs to carry on fighting and fighting harder.

Why is David Kirby grasping at straws?

9 Jan

Once more for the record, I like David. I tried very hard to get to see him in London last time he was over and we’d arranged to meet up for a drink but due to my family situation it wasn’t to be. However, I cannot let that stop me from recalling that we have very differing views on a wide range of things to do with autism and vaccines.

I have noticed of late a tendency for David’s HuffPo blog posts to be more than usually full of ‘if’ ‘maybe’ ‘might’ etc. However his skill as a writer buries these ambiguities and makes them appear certainties. I’m not even sure its a concious thing for David. His need to write well sometimes (I think) obscures a clinical need for precision in such delicate areas as he and I write in.

With that in mind, I recalled a post of his from November 2008 entitled ‘Tom Daschle: Friend to Many Autism Families’ in which he describes Mr Daschle thusly:

By nominating Tom Daschle to head up the Department, President Elect Obama has selected a man who has demonstrated an unflinching willingness to question vaccine safety, and to fight for the rights of those people who believe they have been, or may be, seriously injured by certain vaccinations.

I think David might’ve been trying to insinuate that Tom Daschle’s nomination was good for the autism/antivaccine community. Certainly however, as with the autism/antivaccine’s belief that RFK Jr would be appointed by Obama, this nomination might not be quite what that community is expecting. As blogged by Orac today, Daschle’s true feelings on vaccinations were spelt out by the man himself:

Immunization is probably as — as sound an investment as we can make in good health. I can’t imagine that we could do any better than ensure that every — every child is immunized, and that we understand the importance of — of broad-based immunization and the tremendous good health that can come from it.

Following that, David made a fairly innocuous presentation from a US Army scientist look much more sinister than it actually was. He claimed that the army listed autism as a possible ‘health effect’ of mercury/thiomersal. It turned out that that was not actually the case.

Dr. Centeno’s presentation, entititled ‘Mercury Poisoning: A Clinical and Toxicological Perspective,’ did mention Thimerosal. However, its inclusion was specifically intended to point out that although there has been some speculation about a potential association between Thimerosal and Autism, currently there is no data or science to support such a claim. Neither the AFIP nor Dr. Centeno have been involved in or conducted research on Autism.

After that was the recent debacle when David mixed up Change.org and Change.gov – the latter being a website of Obama. The former a privately owned enterprise for at least the last 2 years. David thought (and committed to a blog post) that Obama had hired pro-neurodiversity bloggers and he imagined a conversation Obama might have with an autism parent:

It is hard to imagine the President one day saying…“I do not think we should devote resources to finding out what happened to your [autistic child]. I do not believe there is anything we can do to help him, and it is not desirable to even try.

This post made me sad and angry. I thought better of David than that. To say that any of us who do not believe vaccines cause autism do not think it is desirable to help our autistic children is massively insulting. I hope someday David can maybe spend a bit of time with parents who don’t think vaccines caused their child’s autism and see for himself how we help our kids. And maybe an apology might be forthcoming also.

David’s latest faux pas is regarding the latest MIND institute study. In a post entitled ‘UC Davis Study: Autism is Environmental (Can We Move On Now?)’ David says:

Autism is predominantly an environmentally acquired disease, the study seems to conclude. Its meteoric rise, at least in California, cannot possibly be attributed to that shopworn mantra we still hear everyday, incredibly, from far too many public health officials: It’s due to better diagnosing and counting.

The autism epidemic is real, and it is not caused by genes alone: You cannot have a genetic epidemic. It really is time that we, as a society, accept that cold, hard truth.

Here’s the full conclusion:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes
in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

Lets look at that last again:

…the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

And yet David seems to to think its crystal clear. The paper itself also contains some direct and fairly easy-to-check errors. For example:

The inclusion of milder cases has been suggested as an explanation for the increase in autism. Neither Asperger’s
syndrome nor “pervasive developmental disorders not otherwise specified” qualify under the category of autism in the DDS system.

Here is what DDS passed on to me in Summer of 2007. I promised not to attribute the quote to an individual so I won’t, but you can email DDS yourselves and ask them.

The current CDER was written in 1978 and updated in 1986, which is why the language is so out of date ( e.g., Residual Autism). California has clinicians in the field who are, of course, using modern criteria in their assessments but then they have to go backwards and try to fit those kids into the 1986 CDER. So you are going to have Aspergers kids, PDD-NOS kids in both categories 1 and 2. Categories 1 and 2 are called ‘Autism.’ But because there are so many clinicians, using lots of different techniques for evaluation, there is a lot of inconsistency and enrollment figures should not be misused as epidemiological data.

Hertz-Picciotto might also be interested in a quote from Rita Eagle PhD of the California Dept. of Developmental Services (DDS) to Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004:

To many clinicians, it appears that more and more children who, in the past, would never have been referred to the regional centers for example, bright but anxious and slightly socially inept kids with average or better IQs and children who, in the past, had been or would have been diagnosed as ADHD, OCD, ODD, anxiety disorder, learning disabilities, psychotic, and so forth are now being diagnosed wit high-functioning autism and/or Asperger syndrome and referred to the regional centers for services.

Truth is that a lot of Hertz-Picciotto 2009 is simply wrong. For an extensive overview of why, please read Joseph’s technical takedown from which I’ll quote his conclusion:

H-P et al. is a surprisingly poor paper. It does not produce any new data in order to support its two main results. It makes an apples-to-oranges comparison between a Finnish epidemiological study and California DDS ascertainment over time. It tells us the obvious about “milder” cases. In the end, I don’t think this is an improvement over the 2002 MIND Institute report to the California Legislature. In fact, it could very well be worse.

The way H-P et al. have gone about trying to show there’s a real rise in autism incidence over time is not a very good way to go about doing things, in my view. There are other ways. For example, I’ve suggested trying to replicate Lotter (1967) in detail. This would not be as easily challenged.

David closes his latest error prone piece with:

But the sooner our best minds in science and medicine come to grips with the fact that these poor, hapless kids have been exposed to the wrong environmental toxins and/or infectious agents at the wrong time, the sooner we can find out how to best treat what really ails them.

This is a prime example of bad science leading the media. David has reported on a paper that has made fairly bad errors and taken them at their word. Sadly, this sort of thing will only continue as long as institutions like MIND (controlled by a man who is dedicated to proving vaccines cause autism) churn out error strewn papers.

In totally unrelated other news…

7 Jan

This post has nothing whatsoever to do with autism – its a purely indulgent sidetrack 🙂

Tomorrow marks a momentous day in my life. I am getting what is known as ‘the snip’.

Nervous? Oh yes. You bet I am. My delightful work colleagues and friends who have known about this since before Xmas have been texting me jokes about vasectomies, emailing my pictures that I shan’t describe, dropping hilarious jokes in my Facebook inbox, Direct Messaging me equally hilarious comments on Twitter. Oh, its been fun I can tell you.

As a way of making me feel slightly less nervous about the whole thing, I’ve decided I’m going to Live Tweet the whole operation. This means you – yes you – can keep up with an um, blow by blow account of every gory detail live and as it happens. From my pain-wracked fingers to your eyes as it were.

So, how do you get onboard this train?

You can join Twitter and Follow me. Refresh my home page every so often.

Or a better way is to join up, follow me as above and then go here which is a Twitter Search for the phrase #kevsnip which I will include in all my posts from the operation. You can also use this phrase if you want to Tweet as well.

Kick off is around 3pm GMT. See you there!

Autism community show their compassion

6 Jan

I’ve refrained from blogging about the death of Jett Travolta because I don’t really know what to say about it directly. I’ve mentioned the lad before in passing and his dad in terms of the suggestion that Jett was autistic and his mum and dad were refusing to recognise his autism because their scientologist beliefs wouldn’t let them. I definitely have opinions about the life and death of Jett Travolta but, hey guess what? Maybe right now isn’t the time for me to air them?

In fact, whilst I think about it, maybe this isn’t the time for any autism group to air them when those opinions are simply carefully veiled hit-pieces designed solely to try and draw attention to ones own ideas about autism causation. Distasteful isn’t the word when you read something like the below from Dan Olmsted:

We don’t know why Jett Travolta died, but we do know that our environment is making more and more of our kids sick while the medical community and public health officials deliberately avoid investigating “the equivalent of a metallic chemical,” whether it’s found in commercial products, vaccines or carpets with spilled mercury. Our kids are paying the price.

which appeared at the end of a piece he wrote on AoA trying to link Kawasaki disease (which the Travolta’s say Jett had), acrodynia (a form of mercury poisoning) and autism. The man has absolutely no shame or decency.

But even Olmsted’s lack of social skill pales into insignificance when compared to the group Autism United who apparently tried the most appallingly bad taste PR stunt to promulgate their message.

This is a difficult time for John and Kelly, and our prayers are with them,” said Ain. “But this could be an opportunity for them to use their son’s death and their celebrity to help thousands of parents, who are caring for sick youngsters.

Yeah, because if one of my kids had literally _just_ died the first thing I’d feel like doing is jumping in front of a TV camera and ‘using my childs death’.

Jesus Christ. Gave the family a break yeah? Whatever his beliefs were and whatever my opinions about them are, I hope I can see the truth about how John Travolta felt about his son.

If there’s anyone out there who sees that and can’t see that the man loved his boy then there’s something wrong with you. If there’s anyone out there who feels that this is a good time to start *using* Jett Travolta’s death to further their own crackpot ideas, there’s something wrong with you.

Again, with the adult autistics

4 Jan

One of the bigger conceptual issues in the divided autism community is adult autism. To some (me included) the idea of autism being a childhood issue is misguided and just plain wrong. To others, autism _is_ a childhood condition.

Part of their misunderstanding is that adults with autism are just not given enough attention and thus, it is hard to ‘see’ their existence, except online where it is clear to those who are prepared to be realistic that there are plenty of adult autistics of various functional abilities.

My stance is this: there is no decent science that has looked to see in what number adult autistics exist as compared to child autistics. However, it is obvious there are many. The NAS statistics give these figures (with caution) for the UK:

The estimated number of children under 18 with an autism spectrum disorder (ASD) is 133,500. There could be over 500,000 adults who have an ASD. So just over 74% of people with an ASD in the UK could be adults.

However, this is not certain. What is certain is the absolutely terrible state of knowledge regarding adults with autism in just about every country you care to mention:

A survey performed by the National Autistic Society (NAS) found that Portsmouth City Council and Hampshire County Council do not know how many adults in their area have the learning disability.

The story is repeated up and down the UK.

A 2004 audit on ASD in Scotland tried to present on overall report on the ‘state of ASD knowledge’ in Scotland. Most striking to me as I read the report was the comments that each local authority/NHS partnership had regarding an answer to the following question:

“Research tells us that prevalence rates of autistic spectrum disorder represent an underestimate. To what extent do you consider the numbers above to be an accurate reflection of all those who live in your area?”

Argyll & Bute Council
It is believed that the figures represent a significant under-representation of those with ASD in Argyll and Bute. This was thought to be due to a historical under-diagnosis and the absence of clearly defined referral pathways and multi-agency assessment processes for adults.

East Renfrewshire Council, NHS A&C and Greater Glasgow NHS
…as a result of changing patterns of diagnosis over recent years there are likely to be substantial numbers of adults with ASD who are not known to services and are not diagnosed as having ASDs.

AYRSHIRE AND ARRAN
It is apparent that information collection and collation for adults is almost non existent.

DUMFRIES AND GALLOWAY
There is little doubt that this number is far short of the actual number of adults in Dumfries & Galloway with ASD.

GRAMPIAN
There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability.

HIGHLAND
It is believed that these figures comprise a significant underestimate due to the lack of a diagnostic process particularly for adults. It is believed that the figures for younger children are accurate due to the development of diagnostic tools for children are accurate due to the development of diagnostic tools for children and the establishment of multi-disciplinary partnerships which include education.

LANARKSHIRE
The estimated numbers provided for the pre-school and primary school ages are thought to be a reasonably accurate reflection of the true picture. However the estimated number of secondary school children is less accurate and the estimated number of adults with ASD is likely to be a considerable underestimate of the true prevalence.

ORKNEY
Figures for children are an accurate representation of needs. One or two children may yet be diagnosed. Figures for adults are under estimated as diagnosis has not been made and access to specialists is variable.

Perth & Kinross Council
Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

This meant that 45% of the areas covered in Scotland clearly felt that there was a severe under diagnosis of adults in Scotland. It was also acknowledged that there were people on their books who were clearly autistic but had no diagnosis.

It seems to me that the best answer to the question of how many adult autistics are there is: no firm numbers but obviously lots.

Or, to put it another way – my child isn’t getting any younger…how about yours? Looking forward to their adulthood with a culture that doesn’t recognise them?

Age of Autism's reporter of the year 2008

3 Jan

Age of Autism’s reporter of the year for 2008, David Kirby, made something of an error yesterday. On the Huffington Post, the following headline appeared:

Obama Transition Team: “Recovery from autism is neither possible nor desirable”

You see, David was alluding to the fact that Kristina Chew and Dora Raymaker head been appointed by Change.org to be their autism bloggers. Trouble is that somehow he got the idea in his head that Change.org was actually Change.gov’s website.

Change.org is actually a social action networking site run by people who took the time to sift through the applications they received and interview those they shortlisted. They were very, very knowledgeable about the split in the autism community and decided that rather than rely on the sort of scare-mongering and factless blogging that permeates the vaxosphere they would get their facts about autism from a professor with an autistic child and (gasp!) an autistic person themselves.

Lets be clear about the size of David’s error here (in case the post is now gone I have a screenie for you to grab) davidkirbyoopsie

David has pretty much just accused the Obama transition team – without doing the most basic of fact checking – of wanting to leave autistic children to ‘a nightmare without end’.

A lot of David’s post is factless twaddle and made me quite angry to read. He (like everyone else on his side of the autism divide) states there are thousands of recovered autistic kids? Where? Where are the case studies? Certainly not in PubMed.

David claims Kristina doesn’t speak for the ‘countless thousands’ of parents he knows who think vaccines injured their kids. So? AoA don’t speak for the ‘countless thousands’ if not millions of parents that exist all over the world who don’t think vaccines cause their child’s autism.

I have a very strong suspicion in fact that David didn’t actually visit the website of Change.org. If he had he would’ve seen instantly just by the design of the site that its nothing to do with the transition team. I think some AoA bigwig forwarded on Kristina’s posts and ‘asked’ David to blog about them pointing out all the key ranty elements David mentions in a style that is not usually his.

Perhaps the most damage will be done by the paragraphs:

The President Elect has an old, dear friend going all the way back to Chicago, with a young son on the autism spectrum. That friend will soon be a Senior White House Official.

It is hard to imagine the President one day saying to this man: “I do not think we should devote resources to finding out what happened to your son. I do not believe there is anything we can do to help him, and it is not desirable to even try.

I’m afraid David, that by placing words in the President elects mouth – and utterly wrong words at that – you have demonstrated a certain hubris.

Not only are you wrong that Obama has shown any inclination to say that, Kristina Chew has shown no inclination to say that either. Unlike you, she is parent to an autistic child and you have just said that she feels it is not desirable to help her son. I hope you have the grace to apologise to her publicly as these words are far from true. Maybe you should try spending some time away from the anti-vaxxers and spending some time with the _actual_ autism community – a community who work damned hard with their children. They just don’t subject them to meaningless, expensive and dangerous experimentation.

Update
Age of Autism are obviously not HuffPo readers – they just posted their own copy of the story. And then just as quickly deleted it, but not quickly enough to beat the mighty G. aoaasses click for bigger.

Change and Hope

3 Jan

Change and Hope–the catch words of the Obama campaign.

You may recall that I was pretty hopeful of the change that Mr. Obama was promising to the disability community. We are only a few weeks away from the Inauguration and I thought it might be a good time to review some of the promises made during the campaign.

The Obama/Biden Disabilty Plan and Autism Plan were impressive for doing what most politicians run from: they make clear commitments.

Since we have commitments, it is definitely worth checking in on those commitments from time to time. Now is as good a time as any, as we prepare for the new administration to come to power.

Item number 1 on the Disability Plan is one I think every U.S. parent would welcome: fully fund the Individuals with Disabilities Education Act (IDEA). For any who might be aware, this law mandates special education in the U.S., and requires that the Federal Government fund 40% of the cost. While the law “requires” the Feds pay 40%, they’ve never come close. Truly, it is a disgrace that we as a nation could leave such a promise unfulfilled. I hope that Mr. Obama can make good on this commitment.

But, the Disability Plan is much larger than this one item. Let’s take a quick look at the headings–the outline, if you will– for the Obama/Biden Disability Plan. Let’s take a look and remember the commitments made. The actual document is about eight pages long, so the headings make a good summary for blogging.

I. PROVIDING AMERICANS WITH DISABILITIES EDUCATIONAL OPPORTUNITIES

Fully Funding the Individuals with Disabilities Education Act
Early Intervention for Children with Disabilities
Support Universal Screening
Support Vocational Rehabilitation Programs
Improving College Opportunities for High School Graduates with Disabilities
Make College More Affordable
Strengthen Community Colleges
Authorize a Comprehensive Study of Students with Disabilities and Transition to Work and Higher Education

II. ENDING DISCRIMINATION AND PROMOTING EQUALITY OF OPPORTUNITY FOR
PEOPLE WITH DISABILITIES

Restoring the Americans with Disabilities Act
Appointing Judges and Justices Who Respect Laws Designed to Protect People with Disabilities
Increasing Funding for Enforcement
Supporting the Genetic Information Nondiscrimination Act
Guaranteeing Health Care Coverage
Improving Mental Health Care

III. INCREASING EMPLOYMENT RATE OF WORKERS WITH DISABILITIES

Increasing Executive Branch Hiring of Workers with Disabilities
Effectively Implementing Section 503 of the Rehabilitation Act
Providing Private-Sector Employers with Resources to Accommodate Employees with Disabilities
Encouraging Private-Sector Employers to Use Existing Tax Benefits to Hire More Workers with Disabilities
Establishing a National Commission on People with Disabilities, Employment, and Social Security
Supporting Small Businesses Owned by People with Disabilities
Assuring Workers with Disabilities and Family Caregivers Get the Flexibility at Work They Need
Expand the Family and Medical Leave Act
Encourage States to Adopt Paid Leave
Mandate A Reasonable Amount of Paid Sick Leave
Protect Against Caregiver Discrimination

IV. SUPPORTING INDEPENDENT, COMMUNITY-BASED LIVING FOR AMERICANS WITH
DISABILITIES

Assuring the Rights Affirmed in Olmstead v. L.C.
Supporting the Community Choice Act and Direct Care Workers
Supporting the CLASS Act
Streamline the Social Security Approval Process
Protect Voting Rights
Amending the Medicare “Homebound” Rule
Investing in Assistive Technologies
Protecting the Safety of Individuals with Special Needs
Supporting Americans Living with Autism Spectrum Disorders
Strengthen VA Specialty Care

Again, remember that’s just the headings. The entire document is eight pages, and includes many concrete commitments. Much (very!) stronger than anything the McCain/Palin campaign had to offer.

One thing that impressed me greatly in the Disability Plan was the emphasis on adult issues. Yes, I realize that this is the general disabilities document and not the autism document, and that the Autism Plan might focus more on children, but it is clear from this document that the people advising Mr. Obama on disabilities were keenly aware of adult issues.

Take a quick look at the section from the Disabilities Plan on autism (it’s second to last in the headings). There is a good mix of adult and child issues represented:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama and Joe Biden believe we need to research treatments and search for the causes of ASD. Obama has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Barack Obama and Joe Biden believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. They will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program – a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both
children and adults with ASD.

We all will read that through our own perspectives on autism. For example, I bet some groups will key in on “neurobiological” and others will key in on “as diagnostic criteria broaden and awareness increases…” But, the above short blurb is much more concrete than anything I’ve seen from a politician in recent years. And…that’s just the short version. There is a full document on autism by itself.

It is important to remind ourselves from time to time of the commitments made by Mr. Obama. He is inheriting a very bad economy and a difficult war. It will be very easy for people with disabilities to slip through the cracks, yet again.

I hope that doesn’t happen.

I hope.

Hope was a big word for the Obama campaign. Hope is a huge word for families with disability. We are familiar with the roller coaster that hope can bring. Note that I said “familiar”. It is not a roller coaster one gets “used to” or “accustomed to”. Mr. Obama may be the one chance in my lifetime for real change in the lives of adults with disability. I really don’t want to see that hope crushed.

So, we will watch. We will offer input and monitor progress.

We will hope for change.

Thanks to CS for this comment which gave me the impetus to get this post out.

Generation Rescue and Change.Gov

2 Jan

Sometimes you put off a project and it goes stale.  The moment has passed, the project never gets done.  Then again, sometimes you put off a project and it gets more interesting

Such is the case of a comment I saw on Change.Gov. I saw it and thought I’d include it in a future blog post I am considering (let’s see if I write it before it goes stale!). But, instead of missing the window to blog it, enough has happened that it is even more interesting.

Change.Gov is the Obama transition team’s website. In the spirit of open government, they are allowing people to submit questions for review. Other citizens (not only US, by the way) can vote on how important a topic is and, one assumes, the subjects with a lot of votes will get noticed by the transition team.

Given that, I was not surprised to find a question submitted by Generation Rescue’s Kelli Ann Davis. The question is copied below:

“Jenny McCarthy and Jim Carrey were named 2008 Couple of the Year (www.ageofautism.com) due to their advocacy work for Generation Rescue. Why hasn’t the Transistion Team made autism a top priority and sat down with the leaders of this organization?”
Kelli Ann Davis, Reno, Nevada

Since I first saw this, Orac has blogged about it. Not only did he blog it, but he did a very uncharacteristic move: he called for a poll mob ala P.Z. Myers. Yep, Orac got people to log in to Change.Gov and vote on Ms. Davis’ question. Given that one has to actually register before voting, the effect is impressive. At this point, 200 people are voting against Ms. Davis’ comment vs. 137 pro. I don’t recall the numbers from when I first saw it, but I do know that the votes were more “pro” than “con” when I first saw it.

This has not gone unnoticed by the good people at Generation Rescue. Kim Stagliano recycled not only the Age of Autism’s methods (name calling) but recycled an old post by Mark Blaxill as well. Frankly, I am amused. I found the original post by Mr. Blaxill amusing (not in the way he intended, I am sure), and I find it amusing still.

But, that is not enough to really blog about, at least in my book. Rather, I think it is worth taking the time to put in public why I opposed Ms. Davis’ comment.

Go back and read it again. The first thing that strikes this reader is the disingenuous nature of the comment. Jenny McCarthy and Jim Carrey were named couple of the year by the Age of Autism? Huh? I guess if they figure that the Obama (or, as Ms. Davis spelled it for some time, “O’Bama”) team doesn’t know the history of their blog, that might work. However, for those of us who know the Age of Autism as a rebranded “Rescue Post”–the blog of Generation Rescue–it is an odd move, to say the least:

Generation Rescue, which they call “Jenny McCarthy’s Autism Organization” voted Jenny McCarthy and her boyfriend “Couple of the Year”. Were I, a blogger on LeftBrain/RightBrain, to name Kev “LeftBrain/RightBrain’s pick of autism leader of 2008”, would you be impressed? See what I mean?

But, the disingenuous nature of Ms. Davis’ question is just the symptom, not the real problem. Actually, I see two big problems with Ms. Davis’ proposal. (1) It has all the appearance of self promotion, both for Generation Rescue and for Jenny McCarthy and Jim Carrey. And, (2) No surprise, I am sure, but I find Generation Rescue’s “Couple of the Year” to be highly inappropriate representatives of the “autism community”.

Let’s look a bit closer at these concerns, shall we?

First, keep in mind that Generation Rescue is an organization led by business people and PR people. Even without that, it’s pretty clear that they want to break out into being accepted as a mainstream autism organization. What better way than to say that they are advising the administration on autism issues? As to Jenny McCarthy, is there anyone who doubts that she has been rebranding herself as an autism “activist”?

Still wondering about the self promotion angle? Imagine the talk show circuit next year (and as many years into the future as Jenny McCarthy autism books sell):

“Oh, yes, Oprah, as I was just saying to Barack….”

In addition to Jenny McCarthy potentially cashing in on any meeting, how long before Generation Rescue would be touting themselves as advisers to the administration?

We are talking about the people who grossly inflated the number of people who attended the Green Our Vaccine Rally for effect. I’ve heard estimates of 500 to 1,500 attendees from people who were actually there. GR claims 8,000. If they would do that, they would play a meeting with the Obama team to the hilt.

Keep in mind, these are the people who publish blog posts claiming that HHS Secretary Leavitt stated in public that of course the government knows vaccines cause autism. To back that up, they claimed that someone overheard a conversation outside a church (if I recall correctly). If it were journalism rather than cheap blogging, that would be in the running for irresponsible story of the year. But, instead, it is just an example of the extreme lengths Generation Rescue and their team are willing to go to in order to keep their story alive. What would happen if they were able to talk about closed door meetings with people close to the Obama administration?

Moving on to my second concern: are Jenny McCarthy and Jim Carrey really appropriate as advisers to the transition team? Leave out the obvious questions of the whether people who propagate bad science and, in so doing, are endangering public health. I don’t have the space here to go into what has already been covered so well by Kev on this blog (and many, many others on other blogs, e.g. AutismVox or I Speak of Dreams ). Let’s just say I’d rather have Mr. Obama listening to the sources Mr. Bush used to formulate the decision to go to war with Iraq than listening to Jenny McCarthy on autism.

For example, remember how Jenny McCarthy’s story about her encounter with Barbara Walters changed dramatically between her book version and her interview version? Can we really have someone talking to advisers to the President of the United States and then “remembering” the exchange in whatever way puts her in the best light?

Consider that hypothetical Oprah show quote I had above. Flesh it out:

“Oh, yes, Oprah, as I was just saying to Barack, vaccines caused an epidemic of autism. I could tell he was listening and understood all too well, but I think that even he is afraid to admit the truth in public”.

As to Jim Carrey…well, remember his major stumble at the Green Our Vaccines rally? When asked what vaccines could be left out of the schedule, he said “tetanus”. Seriously, he had just spoken at a rally, but he hadn’t even done the homework as to what his own side thought. Sorry, he isn’t an expert who should be advising the administration, he is still at the level where Generation Rescue people should be being coaching him on what to say. Somehow I am flashing on the stories that have been leaked about coaching sessions with Sara Palin (Africa is a continent?). No, no, no. This is not a man I would want representing me even if I did subscribe to the Generation Rescue story. He just doesn’t have the depth of knowledge to meet the task.

To conclude, let’s answer one of the questions implicitly raised by Kim Stagliano’s blog post–why are people voting against Ms. Davis’ question? My answer: people aren’t voting against Ms. Davis’ question because it’s Kelli Ann Davis. They aren’t voting against it because it is promoting Generation Rescue or Jenny McCarthy (even though those are valid reasons). They aren’t voting against it because Orac told them too. They are voting against it because what Ms. Davis is proposing is a bad idea.

At least, that was my reason.

[Note: I made minor changes in this post shortly after publishing it]

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