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Measles rising thanks to MMR/autism idiots

29 Nov

There’s a whole bunch of flat-earthers who insist despite all scientific evidence – both epidemiological and clinical – to the contrary that MMR causes autism. Jenny McCarthy for example.

In the UK this belief started 10 years ago thanks to the pomposity of Andrew Wakefield’s grandstanding and utterly fact-free press conferences insinuating a link between MMR and autism. Being of a generous nature, Wakefield decided to share his wisdom with America – this means that the Americans can look forward to sharing in the good tidings:

Fears that up to 100,000 children in England could be infected with measles in a major epidemic were raised today after government figures showed a sharp rise in cases of the disease.

The number of measles cases in England and Wales so far this year has exceeded 1,000 for the first time since 1995, according to the Health Protection Agency (HPA).

But so what right? Measles is nothing!

One in 2,500-5,000: Death
One in 10: Hospital treatment
One in 1,000: Meningitis

So, no. Measles isn’t ‘nothing’ its a disease that 10% of the time hospitalises people at the very least.

Lets be absolutely clear what the MMR/autism flat-earthers are doing here. By living in denial about the science that has clearly established no link between the measles component of MMR and recommending ‘spacing out’ vaccine schedules, or not having the measles component at all and going with an ‘alternative’ vaccine schedule these idiots are directly placing your child and you in the firing line of what is a fatal disease.

If your child has not been vaccinated with MMR, please – please – take them now. Don’t let the flat-earthers get away with it.

If you’re an MMR/autism idiot please take yourself and your brood off to an island somewhere where nobody else lives and where the rest of us don’t have to share the consequences of your idiocy.

Paul Shattock gets his Biatch on

29 Nov

Alongside the error strewn Edelson piece that I already blogged about, Communication also ran a response from Paul Shattock that avoided Edelson’s mistakes of making factual errors about chelation and Tariq Nadama by simply going for a handbag wielding biatch attack more suited to Paris Hilton sulking about Nicole Ritchie wearing the same dress as her:

Although of no relevance, Michael Fitzpatrick’s views on biomedical approaches designed to
ameliorate some difficulties experienced by people with autism, and on me personally, are widely disseminated in newspaper and magazine articles and blogs. I remain unenthusiastic about encouraging
discussions of my personal inadequacies in Communication.

Miaow! Paul Shattock’s lip trembles with rage as he considers the lack of worth of Michael Fitzpatrick’s opinion.

Actually, I can’t recall on part of Mike’s book that espoused any views on Paul Shattock. Having just done a quick check, I see that he appears 3 times. Once in the Preface, once on page 71 and once on page 118. On _none_ of these occasions does Mike express any opinions on Paul Shattock.

He goes on:

Evidence of efficacy for many interventions from appropriate and scientifically valid research-based protocols is being published.

Hear we go again. ‘Is being published’. How long has the autism community been hearing this? Tell us _when_ Mr Shattock, or preferably, refer to supporting material that _has_ been published in a decent journal. And what ‘interventions’ are we talking about? Mr Shattock is utterly ambiguous.

Shattock then goes on to claim that the entire membership of NAS wants research into such things. I can assure him thats nowhere near true. I can think of several NAS members who want to *move on* from this never ending promise of science that is always ‘coming soon’ and yet never arriving.

Shattock goes on:

The American Academy of Paediatricians (AAP) is now actively investigating the usefulness of such interventions and members of the American Academy of Paediatric Gastroenterologists (AAPG) are currently collaborating with the Autism Society of America (ASA) and the Autism Research Institute (ARI) in investigating gastrointestinal issues.

I think Mr Shattock maybe overestimating the AAP’s keenness to stay chummy with ARI. I also can’t find any org called the American Academy of Paediatric Gastroenterologists so I can’t comment on how closely they’re working with ARI, or if they exist at all.

Shattock fumed on:

Professor Rutter, at the recent NAS conference, drew attention to the need to investigate environmental factors and mechanisms involved in triggering autism and to study dietary
treatments for autism.

Mike Stanton saw Rutter at that conference. He didn’t mention what Shattock reports but there’s nothing particularly earth shattering about the idea of environmental factors and mechanisms being involved with autism – except we all know what Shattock, one time warm-up man for Andrew Wakefield, really thinks these are, and for those there is no evidence and I also doubt Rutter has any truck with these ideas either.

Its an odd, petulant semi-rant from Shattock. I have no idea what use he thinks it will be to seemingly purposefully misinterpret Mike’s words. It should be easy to refute Mike – stop talking about studies that will be published and get on with publishing them. Science is the final arbiter of scientific ideas, not a mudsling from someone on the edge of scientific ideas regarding autism.

Stephen M Edelson gets it wrong, wrong, wrong…

25 Nov

Communication is the members mgazine of the UK’s National Autistic Society. In an issue earlier this year, Mike Fitzpatrick, GP and author had an extract from his latest book published.

The extract touched on chelation and the death of Tariq Nadama.

This prompted a bilious response this month from Stephen M Edelson in this months Communication. The level of ignorance in his response is astounding. I have attached the whole response as a Word document to save me getting accused of taking things out of context. BUt for here, I’ll quote selected parts.

Fitzpatrick has been a longtime, outspoken critic of chelation. (Chelation involves a medication, such as DMPS or DMSA, which removes neurotoxic heavy metals, such as lead and mercury, from the body; it is given under the supervision of a doctor.) If an individual tests with very high levels of one or more heavy metals, chelation is the treatment of choice throughout the medical profession.

If test results indicate very high levels in someone on the autism spectrum, isn’t this person entitled to the same medical care as someone without autism?

This is far too simplistic. Of _course_ if someone on the spectrum has test results that indicate high levels of metals they should have the standard treatment. That is a strawman.

The _point_ is rather more complex that that as Mike mentions in his book and I have blogged about numerous times.

The labs that Mr Edelson and his DAN! colleagues recommend test for levels of metals in people on the spectrum very, very often give false results. Take this extract of the testimony of Dr Jeffrey Brent, a sub-specialty board certified medical toxicologist and the former President of the American Academy of clinical Toxicology.

…I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, *100% of the time they’ve been normal*.

So when ‘these Doctors Data’ type of labs do the tests they indicate the need for chelation. When _experts_ in the field such as Dr Brent do the gold standard tests ‘100% of the time they are normal’.

Dr Edelson needs to realise that _that_ is why chelation is an invalid treatment for autism. The fact that when taken to an expert in Chelation and Toxicology, the results usually indicate that chelation is not warranted.

Edelson continues:

In his article, Fitzpatrick brings up the accidental death of Tariq Nadama after chelation treatment. What he does not tell the reader is that Tariq was given the entirely wrong drug, one with a similar name and label that was nearby on the office shelf. Regrettably, these drug errors do
happen in hospitals and doctors’ offices and Fitzpatrick has exploited this unfortunate incident several
times in the past without explaining the complete story. (I have already corrected Fitzpatrick in a previous issue of Communication, and I am disappointed that the editor knowingly allowed such half-truths to be disseminated to NAS’ membership once more.)

Once more, Mr Edelson is quite wrong. Tariq Nadama was not given a drug by mistake ‘with a similar label that was nearby on the office shelf’.

When Dr Roy Kerry (who joined Mr Edelsons loose affiliation of practitioners after the death of Tariq Nadama) was prosecuted for the death of Tariq, the following was admitted by him:

70. Respondent admitted that EDTA is very rare to use on children.

71. Respondent admitted to using Disodium EDTA to chelate Tariq.

72. Respondent stated to Investigator Reiser that Disodium EDTA is the only formula of EDTA he stocks in his office.

73. Respondent admitted that CaNa2EDTA is available but that he has never used this agent.

I would recommend that Mr Edelson reads the entire complaint against Dr Kerry.

Edelson continues again:

Over the past 20 years, scientists have clearly documented immune system dysfunction and gastrointestinal problems associated with autism. Many of these problems can be treated successfully using established medical treatments.

Of course, this is twaddle. I challenge Mr Edelson to provide peer reviewed journal published science to back up these statements. As recently documented by Professor Stephen Bustin, the gastrointestnal ‘link’ to autism is not valid and never was.

I wonder why these treatments that so successfully treat autistic peoples autism have never had one single (that I can find) case study published?

Update 28 Nov 2008

An update from Mike who read some of this thread:

It is true that a number of environmental factors have been identified as causing autism in a small number of cases – these include viral infections (rubella, CMV) and drugs (thalidomide, sodium valproate). What is striking is that ‘over the past decade not a single new environmental factor has been identified as playing a significant role in the causation of autism’ (Defeating Autism: A Damaging Delusion, p 81). Indeed, it would be more accurate to say ‘over the past two decades’. By contrast, over this period there have been dramatic advances in the genetics of autism. Meanwhile intensive researches into alleged vaccine-autism links have failed to confirm any causative relationship.

‘The conviction of the biomedical activists that there must be some environmental explanation for the rising prevalence of autism has grown in intensity in inverse proportion to the emergence of scientific evidence in favour of any particular environmental cause.’

I object! (Part 3)

20 Nov

If you’ve been reading these past few days, you know that I find a recent letter sent to the IACC by a number of autism organizations to be, well, objectionable (hence the post titles!). I’ve noted that I don’t like the way they claim backing from a united “autism community”. I don’t like the way they are presenting their arguments in their letter (here and here).

And now, for the last part of their letter.

Bullet point (d), or, we want a bigger say

Provisions for accountability and evaluation for the research spending are absent. Adoption of oversight, review and evaluation mechanisms, such as an Autism Advisory Board and a Department of Defense grant review model, should be added to the plan.

They are asking for an “advisory board” or AAB and a grant review system. Generation Rescue attempted (and apparantly failed) to get an AAB put in place by lobbying he Secretary of Health and Human Services. Now they are pushing the IACC to institute an AAB and also add DoD grant review model.

Let’s look at these proposals one at a time, starting with the AAB.

This is not the time to institute the Autism Advisory Board. President-elect Obama will soon be in office. He has specific ideas on autism and disabilities in general. These include an “autism czar” to coordinate autism activities. Let Mr. Obama and his team make the next changes in the structure of how autism research activities are conducted.

Second, the IACC is already an advisory board. Why are people asking for a second layer, when the IACC process has been working well? OK, you got me, it’s a good bet that these people don’t think the process has been working well. If I were to venture a guess, they are unhappy about the lack of a prominent statement about the “epidemic” and/or “vaccines” within the Plan.

Would an Advisory Board change that? Let’s look at how the Advisory Board is mentioned in the report that accompanied the CAA (note that the “autism advisory board is not mentioned within the CAA language itself):

[congressional report] The committee further re-examined the Interagency Autism Coordinating Committee (IACC). In particular, the committee wanted to increase the amount of public participation (from two individuals) to at least six. In addition, the IACC has been tasked to make recommendations to the Secretary regarding the public participation in decisions relating to autism spectrum disorder. For instance, the committee notes that the IACC may recommend providing other, additional, formal mechanisms, such as an Autism Advisory Board, to provide additional public feedback and interaction. Further, the Secretary may opt to provide such a mechanism without the recommendation of the IACC.

The committee expects that the IACC will be the primary mechanism for the coordination of all research, surveillance, and early detection activities within the Department of Health and Human Services. As agencies implement specific activities related to autism spectrum disorder, they should strongly consider those activities outlined in the Autism Research Matrix.

So, even if an Advisory Board were formed, it would still be the IACC that has the task of coordinating autism activities within HHS.

That would seem to me to be a potential reason why they are now asking for something akin to the DoD grant review process–to add some actual power–oversight and control–to the new “advisory” groups they are proposing.

Again, perhaps someone can correct me here in what I am about to say. But from my perspective I can’t see why the NIH needs a second layer of grant review. For the DoD, an agency that is not primarily involved in medical research, I can see a review board. For the NIH, an agency whose functions already include a peer-review grant process, I don’t see that the case is very clear at all for an additional review board. Let the NIH do what it is chartered to do.

Let’s look at that last bullet point from the letter:

[Letter]The planning process diminished the voices of important segments in the autism community. Future activities related to the SP should ensure integral participation of the diverse community representing families and individuals with autism.

First, I’d switch the wording in that last sentence to “….representing individuals with autism and their families.” (and I wouldn’t object at all to people who would change it to “…representing autistics and their families”)

Second, the very segments of the autism community who are signing this letter were given ample opportunities to be heard. IACC meetings have been dominated by a very few with a vary narrow message. An entire “Town Hall” meeting was held on the West Coast to obtain more input. Letters have been sent, investigations mounted and pressure applied. It is quite a stretch to state that voices were “diminished”.

Having your voice “heard” and having your requests acted upon are very different things, however. And that is the flaw in the logic of this letter: the voices were heard, but it appears that they carried a message that didn’t meet the basic criteria for inclusion in the Strategic Plan: a basis in sound science.

To take a recent example: People can say over and over, “we want research into chelation”. But, if (a) there is no reason to suspect chelation would help as autism is not heavy metal poisoning, (b) there is a possibility that chelation could hurt as demonstrated by recent rodent studies

Conclusion, or, tell them again

[letter]We ask that the IACC approve these specific action items: (a) adoption of amendments to the plan responsive to the above 5 concerns; (b) specification that research spending be at least the CAA minimum and establishment of a workgroup to be convened in January 2009 to develop recommendations to the IACC for increasing the research spending to at least that minimum and adding objectives which will bolster research on the environment, gene-environment and treatment; (c) inclusion of oversight provisions including an AAB and DOD-model review process; and (d) specification that oversight bodies and workgroups have strong and diverse community representation.

Which pretty much summarizes the bullet points above. My eye was drawn to the idea that a workgroup be convened in January 2009. Why? Could it be that they would like this workgroup to be a fait accompli when President Obama takes office? Again, let Mr. Obama put his plans into action.

The final short paragraph caught my eye as well:

[letter]Each day, decisions are being made on autism research by NIH and other federal agencies which are outside of the SP. It is imperative that the plan be improved in the areas noted above at the November 21, 2008 IACC meeting.

The strategic plan (SP) is not approved yet. By definition, decisions are being made that are outside of the Plan. Also, I sincerely hope that decisions continue to be made outside of the Plan. Who can predict what may happen in the next few years that may require action outside of the Plan? As the old saying goes, if we knew what the answers were going to be, it wouldn’t be “research”. I really have a hard time figuring out why they included that sentence in this paragraph.

The letter is then signed:

Autism New Jersey (formerly COSAC)
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

Much speculation could be had about what tradeoffs were made in order to get all these groups to sign the above letter. It isn’t much of a stretch to say that the letter doesn’t go nearly as far as many of the signatories would have gone on their own in the area of mercury and vaccines.

It is notable that Autism Speaks signed on to a letter with a number of groups that have been quite negative towards AS (to put it mildly). It is also notable that at least one, and this one major, autism research organization is not represented on this list.

I realize it is just one rather short letter, and my responses have been rather long in comparison. I also realize that many of these points are probably obvious to those at NIH and/or working on the IACC. And, yet, I somehow had to do this!

On to more important topics soon!

I Object! (Part 2)

19 Nov

It’s amazing that a relatively short letter could be so objectionable as to take multiple blog posts to discuss.

And, yet, here I am, on my third post. You can read the other two, I Object (Part 1) and Why should the Strategic Plan include vaccines.

Continuing on with bullet points (b) and (c)…

Bullet point (b), or “you are leaving money on the table”

[Letter](b) The plan fails to allocate commensurate resources. The CAA authorized $645 million for NIH research over five years. The plan falls short by close to $200 million. Given the urgent situation, we consider the CAA allocation to be a minimum requirement for federal agencies and feel that even greater resources are needed.

Who is going to say no to “we should apply more resources to the situation”? Certainly not I. But I’m not an MBA. I count resources in terms of how many good research groups are doing quality research in relevant areas. Counting the money, that comes second.

This is similar to the method used by the IACC. People tend to think–and this letter helps perpetuate–the idea that the CAA appropriated money and that the IACC worked from that budget to create the Plan.

Both ideas are incorrect.

First, in admittedly confusing language, the CAA authorized the appropriations. The CAA states, “…there is authorized to be appropriated..”, not, “this amount is appropriated”. Another way to look at it is to see how often “subject to the availability of appropriations” is used in the text of the CAA. It isn’t as though there is a bank account with $645M waiting to be tapped into.

Second, the IACC did not work from a budget and then decide on a Plan. They didn’t say, “Well, we’ve got $645 million, how will we spend it?” What they did was say, “what needs to get done?”. Near the end of the process, they passed the Plan on to the implementation subcommittee to draft the budgets for the various projects.

This sounds like the much more defensible method. The IACC can go to congress and say, “this is what we need to get the job done.” Had they come up with a budget higher than the CAA allocated, they would have been in a good position to ask for more. They are (I hope) in a good position to get their budget fully funded–they can defend why they came to the total cost in their budget.

That said, of course I’d like to see more research funded. But, I’d like to stay on a friendly partnership with the NIH too. Presenting their actions inaccurately (as this letter appears to do) doesn’t accomplish that in my mind.

let’s look at what the CAA authorized to be “appropriated“:

[Combating Autism Act]`SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.
(a) Developmental Disabilities Surveillance and Research Program- To carry out section 399AA, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $15,000,000.
`(2) For fiscal year 2008, $16,500,000.
`(3) For fiscal year 2009, $18,000,000.
`(4) For fiscal year 2010, $19,500,000.
`(5) For fiscal year 2011, $21,000,000.

`(b) Autism Education, Early Detection, and Intervention- To carry out section 399BB, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $32,000,000.
`(2) For fiscal year 2008, $37,000,000.
`(3) For fiscal year 2009, $42,000,000.
`(4) For fiscal year 2010, $47,000,000.
`(5) For fiscal year 2011, $52,000,000.

`(c) Interagency Autism Coordinating Committee; Certain Other Programs- To carry out section 399CC, 409C, and section 404H, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $100,000,000.
`(2) For fiscal year 2008, $114,500,000.
`(3) For fiscal year 2009, $129,000,000.
`(4) For fiscal year 2010, $143,500,000.
`(5) For fiscal year 2011, $158,000,000.’.

So, the $645 million number comes from section c. Two things to notice. First, there are large sums in sections (a) and (b) as well. I hope they are getting appropriated. Second, notice that there is money budgeted for 2007 and 2008 in that number. Remember that the CAA hasn’t been funded yet? Has NIH been sitting on their hands, waiting for the budget before they do autism research? Hardly.

The NIH budget for autism in 2007 is estimated at $127 million ($27M more than the CAA called for all IACC sponsored research, which includes CDC and other agencies). Similarly, $128M is the estimated budget for 2008 ($14M above the IACC budget).

Perhaps I am missing something. It is quite possible. But it appears to me that the NIH is working in good faith here.

Again, given the urgent need–to identify and serve the underserved in this country–I would consider there to be a great reason to increase resources applied by the IACC. I just don’t think that is want the signators of that letter had in mind. Consider the next point they make:

Bullet point c, More environmental research, or, what happened to the “V” word?

[Letter]Research on the environment, gene-environment interaction, and treatment are underrepresented in the draft plan. The plan should apply additional resources to these areas.

As already discussed, I found this statement interesting for what it doesn’t say, far more than what it says. What it doesn’t say explicitly is “mercury” or “vaccines”. As noted in that previous blog post: if the signatories of that letter are OK with this wording, it should be OK in the Strategic Plan.

Sullivan’s take

The order of these two bullet points sends a clear message: The Plan doesn’t use all the money “appropriated” and, yet, the Plan should put additional resources into environment and treatment.

Or, “why don’t you take some of the $200 million and spend it on these areas?”

It would be a good question if that was the way the process worked. (A) the money wasn’t appropriated (so there isn’t $200M sitting unused) and (b) the Plan was built on a “what needs to be done” basis, not “how much do we have to spend” basis. The push for more environment/treatment really needs to be justified in terms of “what needs to be done”.

But, again, I’d agree that more resources would be welcome. And, again, I would suggest attempting to meet the great need of serving the underserved. Research into services like the Taft Transition to Independent Living program comes to mind.

more to follow…

I object! (Part 1)

18 Nov

If you’ve been reading LeftBrainRightBrain lately, you know about “The Letter“. If you haven’t, here’s a quick introduction: A number of autism organizations drafted a letter and submitted it to the members of the Interagency Autism Coordinating Committee (IACC). The letter attempted to invoke “the autism community” (see the AoA blog post for more on that) and that was objectionable to me. Kev took up the idea of Who makes up the autism community. It is clearly an important discussion–there are over 100 comments for those two blog posts.

I’ve been told that the letter marks an achievement in advocacy–bringing together all these groups. And it was–someone got Generation Rescue to accept a document that didn’t explicitly call for research on vaccines. Whatever underling who told the top people there, “this is the best you are going to get” was pretty brave.

But, Let’s get back to the letter itself. Because, believe me, I for one have many more objections to that letter. Going through point-by-point takes some, but I present below my views. I’d suggest this: take a look at the letter, see what you may agree with or disagree with, and check back here to see if you agree or disagree with my take.

I’ll be frank. Every section had something objectionable in it.

Let’s take a closer look at the letter, shall we? I’ll add my thoughts section by section, starting in this post with the introduction and the first bullet point.

Introduction, or, “we are united”

[Letter]November 12, 2008

RE: Concerns on Draft IACC Strategic Plan

Dear Members of the IACC:

The Combating Autism Act required the IACC to prepare a strategic plan for autism research in order to enhance the quality, effectiveness, and overall benefits of autism research spending within HHS agencies. While the 2008 planning activities reflect improvements relative to earlier Autism Matrix efforts, ultimately the draft plan and the planning process have fallen short. Autism advocates have identified a range of deficiencies and each may place priorities on different concerns. Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here.

Ouch–there it is: “Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here”. For any confused as to what “community” means can read the title of the Age of Autism blog post, “Autism Community “United in Expressing Our Disapproval” of the NIH Strategic Plan for Autism Research.”

That’s been discussed a lot (feel free to join in) here and here.

But, let’s look at the substance of the Letter. They make a number of bullet points, (a) through (e).

Bullet Point (a), or “no Urgency”

[Letter](a) The plan fails to communicate a sense of urgency reflecting the alarming increase in prevalence and autism as a national health emergency. The beginning pages of the plan should embody urgency and the critical need of the government to apply the resources to address a crisis situation.

Variations on the word “urgent” are used at least 5 times in the Draft Strategic Plan.

What do they want? They want the Plan to specifically state that autism causes “considerable human and financial toll”, as support for the greater need for “prevention and treatment”. Those are speculations, those are statements from SafeMinds in complaining about the “Strategic Plan” in a previous letter.

Sullivan’s take on “urgency”
When I think of “urgent” in regards to autism, claiming an epidemic is not high (or anywhere) on the list. Finding better ways to help people with autism, yes, that would be high. In terms of the “alarming increase in the prevalence of autism”, I also see things differently that the authors of this letter. I see great strides in identification more people with autism. But, I see a job that is not complete. Racial and ethnic minorities are vastly under-represented in the current autism counts. Autism counts vary significantly by geography. Lastly, but certainly not least in importance, there is likely a vast pool of undiagnosed, underserved adults in this country. But, that is a topic where the mantra “absence of evidence is not the same as evidence of absence” is ignored in place of promoting an epidemic.

Ignoring the underserved is a truly shameful position that these organizations have taken.

However, I am pleased to see that within the Plan, ethnicity, race and lifespan issues are prominent. There is even a prominent statement in the introduction of the Plan on lifespan issues:

[Strategic Plan] Lifespan Perspective: Historically, ASD has been characterized as a disorder of childhood. Although most individuals with ASD will not outgrow their diagnosis, their symptoms will change in form and severity over time. There was great support during the development of this Plan for more research on ASD in older individuals, especially the need for practical strategies for increasing the quality of life and functioning of adolescents and adults with ASD. As individuals with ASD advocate for themselves and expand our knowledge of their experiences and needs, they become partners in the research effort.

Does that rise to the level of “urgency”? I don’t know, I’ll take “great deal of support” happily.

Urgency or politics?
The issues noted above highlight what I see as a big problem with this letter: it is attempting to make the Plan a political document, possibly acknowledging the “epidemic” of “vaccine injury” autism. I am not naive enough to think that there are no politics involved in government sponsored medical research, but the backbone of the NIH process is scientific peer review of research proposals. I’d rather see the Plan document stay closer to that ideal than become political fodder in a struggle that is ripping our community apart.

Such a short letter, so much to discuss. And, we are only at the first bullet point! But, even at this point, it is clear that this is a letter that doesn’t come close to representing the views of this member of the greater autism community.

More to follow…

Who makes up the autism community?

16 Nov

On a recent post, Sullivan asks why vaccines should be included in any strategic plan when ‘vaccines-cause-autism advocacy organizations can’t ask for it?’

Its a good point. What _I_ want to pick up on is the claim that some of the groups who co-signed the letter Sullivan refers to are in any way (as they claim to be) ‘the autism community’. Lets take a look at some of the biggest news events of the last five years related to autism.

The top stories from 2003 came in July of that year. Of the top 100, less than 10 mentioned vaccines. Of the other 90% of stories Generation Rescue mention none, SafeMinds mention none, ARI mention none, NAA mention none, OAR mention none, TACA mention none, Unlocking Autism mention none.

The biggest month for 2004 autism news was May. Non-vaccine stories (on page 1) accounted for 87%. Again, none of the above organisations discussed any of these stories.

The biggest month for autism news in 2005 was August. Of page 1 results, 19% mentioned vaccines (4 were from AoA and about 6 were about the death of Abubakar Nadama). Of the other 81%, none were mentioned by the above groups.

2006 and October is the busiest news month. 3% mention vaccines. Of the 97% of stories that don’t, the organisations above mention none.

2007 sees the busiest news month as April. Of the 93% that do not talk about vaccines, none of the above groups comment on their websites.

2008 – so far April is the busiest news month with 9 mentions of vaccines in the top 100 stories. Of the 91% not talking about vaccines, yep, you guessed it, none of the above organisations talk about the stories.

The single top story regarding autism this year was World Autism day. No mention of this on the websites of Generation Rescue, SafeMinds, NAA, ARI, OAR, TACA or Unlocking Autism.

And these are the people who claim to be the autism community?

The truth is that these people are a series of single issue groups concentrating on vaccines and autism. The truth is that fully 7 out of the 11 (63%) groups who co-signed this letter have no interest in autism beyond vaccines/toxins.

These groups do not, in any way shape or form represent the autism community. I hope the IACC see this clearly.

Why should the strategic plan include vaccines…

14 Nov

…if all the vaccines-cause-autism advocacy organizations can’t ask for it?

I’ve been watching the process for the IACC fairly closely. You may have noticed my obsession. One issue that has come up is…you guessed it, vaccines. IACC meetings have been available to listen to by phone. (thank you NIH!) I’ve listened to long…long…long…speeches about the importance of research on vaccines and mercury. It’s had very broad support from…well…Lyn Redwood and Mark Blaxill. Pretty much silence from the rest of the IACC.

That said, I can’t say I am not surprised that an 11th hour attempt to change the process. Yes, according to a letter sent to members of the IACC, “we as a community community” are “united” expressing disapproval for for the Strategic Plan in the current form. This isn’t new. In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.

But, it’s worth taking a look at the letter. Alternatively, you could trust me to tell you what I found. Better yet, let me tell you what I didn’t find: vaccines. No mention of the word vaccines…or mercury…or thimerosal…or immunization…or epidemic. I seriously had to check that the search function was working as I read that document.

Why point this out? To jab a little fun at our good friends? No, there is a much more important message here:

Take a look at the organizations that signed this letter:

Autism New Jersey
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

If they can’t agree on including “vaccine”, “mercury”, “epidemic” or any variation of those words—

WHY SHOULD THE IACC INCLUDE THOSE WORDS IN THE STRATEGIC PLAN????

Seriously, there has been a big push to get the IACC to make a strong statement on the vaccine issue. And yet, these words are missing from their own letter.

So, I’ll say it again: if Generation Rescue, SafeMinds and the rest can’t agree to put “vaccines” or “epidemic” in a letter, why should the IACC bow to their wishes and include these terms in the Strategic Plan?

Vocational Rehabilitation and Autistic Adults

13 Nov

I recently saw a paper in the Online First section of Journal of Autism and Developmental Disorders called “Use of Vocational Rehabilitative Services Among Adults with Autism“. I knew I had to read it. It comes from one of my favorite research groups, that of Prof. David Mandell. I’ve been carrying this paper around in my pocket for a month now. It is folded, tattered and filled with highlight marks.

The reason for the delay: how to condense this paper into a meaningful blog post without essentially copying the entire paper? As it stands, this will be a series of excerpts. The reason for blogging it: papers on issues directly related to adults with autism are few. This one looks at what I consider to be a very important question: training to get employment for adults with autism.

One other note: I will skip over the data analysis section. This will be a long post already, and I want to concentrate on the discussion of the results. But, rest assured, they did their due diligence and analyzed the data thoroughly.

So, even though this may not be the best presentation of the study, if I don’t do it now, it may never get done.

Here’s the abstract:

This study examined the experiences of individuals with autism spectrum disorders (ASD) in the US Vocational Rehabilitation System (VRS). Subjects included all 382,221 adults ages 18–65 served by this system whose cases were closed in 2005; 1,707 were diagnosed with ASD. Adults with ASD were more likely than adults with other impairments to be denied services because they were considered too severely disabled. Among those served, adults with ASD received the most expensive set of services. They and adults with MR were most likely to be competitively employed at case closure. Post hoc analyses suggest that their employment was highly associated with on-the-job supports. The results suggest the importance of the VRS in serving adults with ASD.

If you are interested, here is the first page (for free).

The paper points out that adults with ASD require considerable supports, with possibly only 15% achieving independence, and another 20% “functioning well in the presence of community based support.” This points out the great need for studies such as this one. We need a better understanding in order to improve the situation for the estimated 65% who are not independent or “functioning well”.

In the United States, the vocational rehabilitation system falls under the Department of Education, and helps with assessments, diagnosis, counseling, job search assistance, assistive technology and on-the-job training.

The outcomes include “Competitive employment”, which involves integrated settings (with supports as needed) and wages at or above the minimum required by law. Alternatively, Non-competitive employment can be paid below the minimum wage, and can include sheltered employment.

Results were compared for people with ASD, Mental Retardation, Specific Learning Disability (SLD) and Other Impairment Cause (OIC).

Individuals with ASD’s have “markedly different vocational needs than individuals with other developmental disabilities”. And “the small body of research in this area suggests that services provided through vocational rehabilitation programs are less than optimal for individuals with ASD.”

The authors stress, repeatedly, the value of employment. The concluding paragraph starts with the statement, “Work is among the most valued social roles in our society. Many individuals with ASD can achieve successful employment outcomes, despite questions about access and cost-effectiveness.” The value of employment is also spelled out in an earlier section:

Our findings are also important in light of research indicating that supported
employment through vocational rehabilitation programs may improve cognitive performance of adults with ASD (Garcia-Villamisar and Hughes 2007) and generally improves quality of life (Garcia-Villamisar et al. 2002).

They found that at the end of VR training, 42.2% of those with ASD were competitively employed, whith 2.1% employed in a sheltered setting. The remaining (55.7%) were not employed. These results are better than those for the other groups. The numbers for those competitively employed were, 39.4% (mental retardation), 37.5% (SLD) and 35.1% (OIC).

They found that 4.3% of individuals with ASD had cases closed for having a disability “too severe to benefit from services”. Compare this to 2% for those with mental retardation, 0.4% for those with SLD, and 2.2% for those in other categories. So, people with ASD were more likeley to be denied services for this reason. They state that this “hints at the possibility” that “some people with ASD’s may never explore the use of VR services because they (or their families) do not see it as a viable option or are discouraged from seeking services.” This could affect the numbers found for those achieving competitive employment.

The costs were compared:

VR expenditures were much higher for individuals with ASD than for those with other impairments except people with MR. This difference may be due to the additional needs of people with ASD (Muller et al. 2003). Alternatively, the VR system may not be structured to provide services to individuals with ASD in the most cost-efficient manner (Hillier et al. 2007). Both potential explanations beg for additional research on the most cost-effective strategies for achieving competitive employment.

The median costs? $2,380 (ASD), $2,160 (mental retardation), $1,108 (SLD), $1,280 (OIC).

So, yes, the numbers were higher for the ASD group. But even $2,160 per person to me sounds like a pretty darned good investment to get a sizable fraction of a group employed.

The authors noted:

VR expenditures were much higher for individuals with ASD than for those with other impairments except people with MR. This difference may be due to the additional needs of people with ASD (Muller et al. 2003). Alternatively, the VR system may not be structured to provide services to individuals with ASD in the most cost-efficient manner (Hillier et al. 2007). Both potential explanations beg for additional research on the most cost-effective strategies for achieving competitive employment.

There is a lot more valuable information in this paper. One thing that is missing is who funded the research. I’d love to hear that this is the sort of research NIH is sponsoring, and will continue to sponsor through the IACC process.

I’ve already quoted part of the conclusion. I think it worth quoting it in whole here:

Work is among the most valued social roles in our society. Many individuals with ASD can achieve successful employment outcomes, despite questions about access and cost-effectiveness. Individuals with autism and their families should seek out supports and employment; other support providers should emphasize employment as a possible social role; and policymakers should continue to examine ways in which they can enhance the variety and accessibility of supports for adults with autism, including vocational services, in order to ensure that they have opportunities to live and contribute in their communities.

ResearchBlogging.org
Lindsay Lawer, Eugene Brusilovskiy, Mark S. Salzer, David S. Mandell (2008). Use of Vocational Rehabilitative Services Among Adults with Autism Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-008-0649-4

Jenny McCarthy and the Holy War

2 Nov

Now I know some people don’t like this blog going after Jenny McCarthy. I understand why (giving air time to air heads seems silly) but I really do believe its important that what this woman says in the name of the autism community is checked, double checked and exposed to the cold light of day.

So – continuing the theme of what Ms McCarthy says at one point in time is not the same as what she says at another I want to present the results of my own Google Phd research.

Lets go back to September 2007 where Evan is recovered:

McCarthy claims that a radical diet, 100% free of gluten and casein, facilitated her son Evan’s recovery from autism….

However, also in September 2007, Evan’s ‘therapist’ describes him as in recovery:

I think Evan is in recovery,” says Sarah Clifford Scheflen, a speech-language pathologist at UCLA and Evan’s therapist since 2005. With autism, a neurological disorder that impairs ability to communicate and relate to others, “early intervention is huge,” Scheflen says, “and Evan received that.”

Fast forward to April 2008 and McCarthy describes Evan again as recovered.

We believe what helped Evan recover was…..

But then two months later Jenny says they will be chelating Evan:

A lot of people are scared to chelate, which is the process of pulling metals out of the body, but it has triggered many recoveries. … Everyone has their own recipe to recovery, but your child might need chelation to get there. With a DAN doctor, I mean these guys are so good, they will help, you know, make sure your child is safe, your child has the minerals it needs to do it. … I’m, of course, scared to do it with Evan, but I plan on doing it this summer because Evan still suffers from seizures……


Four months after that, under the headline ‘Jenny McCarthy: My Son No Longer Has Autism ‘ Jenny says:

Jenny McCarthy says she helped her son, Evan, recover from autism.??…

However, four days after that Evan McCarthy’s paediatrician Dr Jay Gordon described Evan thusly:

Jenny McCarthy’s son is doing better than he was before she started intervention. He is recovering from autism. That’s an ambiguous phrase but it’s the best I can do.

Its a bizarre mish-mash of cured/not cured recovered/recovering – where does the truth lie? Does it matter?

Yes, to me it does. This woman is selling books off the back of the autism community. Part of her marketing is that we all love her and are rah-rahing for her. Well I’m not. I’m not sure she’s lying but there is dishonesty of some kind going on here.

And lets go back to the story in People in September 2007. The first box out says:

“I don’t want to come across like a preacher,” says McCarthy….

And compare that with the story in USMagazine a year and a month later:

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.

Something has happened to Jenny McCarthy between September 2007 and October 2008. Something that has taken her from not wanting to come across like a preacher to making a deal with god to show her the way and she’ll teach the world how. Make no mistake – that is explicit religious terminology. She wants the world to think of her as someone who ‘knows the way’ and she can ‘show them’ that way. The comparisons with Christianity are both undeniable and frankly – disturbing.

Its obvious from hearing that thoughts of Evan’s paediatrician that Evan is not recovered or cured and yet Jenny McCarthy wants to ‘show us the way’? It sounds more to me that Ms McCarthy is becoming dangerously close to religious fervour.

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