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Citalopram no good for autism

8 Jun

An interesting study for me personally as it involves a crazymed I’m familiar with – Citalopram (the generic name) brand name Celexa in the US and Cipramil over here in Blighty.

Citalopram is an anti-depressant of the class SSRI which means ‘selective serotonin reuptake inhibitors’. In plain english an SSRI based crazymed stops serotonin being reuptaken and therefore your neurons wallow for longer in it. This is, apparently, good. Why? I don’t know, I am not a scientist, I am a user 🙂 Well, I’m not anymore, I take a different sort of anti-depressant crazymed called Venfalaxine which is an SNRI. I don’t know how that works either but it does and thats good enough for me. Hopefully it has plenty of formaldehyde and monkey kidneys in it.

Anyway, I had no idea that Citalopram was used off-label for autism and when I heard about this study my first thoughts were ‘what the hell did they expect it to do?’ Shortly followed by ‘Citalopram is some serious shit’.

What the hell did they expect it to do? They expected it to reduce repetitive behaviours.

Seriously.

They put these kids on heavy duty SSRI’s because they flapped their hands and rocked back and forth. Excuse me for being a little rude here but so fucking what?

Apparently

Side effects were more common in the children taking Celexa, the researchers found. Those on Celexa were more likely to have increased energy levels, impulsiveness, decreased concentration, hyperactivity, mechanical repetition of the same movement or posture, and sleep problems.

Oh wait, all the symptoms of the beginnings of what to me sounds like hypomania. Which is (gasp!) a side-effect of most if not all SSRI’s.

Because they flapped and rocked and swayed and liked routine. Good call.

“A medication that we thought would be helpful for these repetitive behaviors was no better than placebo,” he [Bryan H. King] says. “That calls into question how or if we should use [Celexa] or even related medications for this purpose.

Yeah? Does it? How about we call into question the necessity of drugging the shit out of a kid because s/he likes to rock and flap?

I have to wonder, I really do. How the hell did this study – which to me sounds more like torture – ever get past an IRB?

Apologies for the rant but this is appalling to me.

A vaccinated vs unvaccinated study

6 Jun

For as long as I can recall, this has been one of the clarion calls of the autism/antivaccine/pro-disease groups – that the only way to know if vaccines cause autism is to do a ‘simple’ study of vaccinated vs unvaccinated populations. Indeed, Generation Rescue carried out an ill-fated phone survey that in reality meant absolutely nothing so badly was it put together and carried out. But even if it _had_ been well designed and carried out the results were not good for pro-disease anti-vaccine autism believers:

Number of boys and girls with Aspergers
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 2%

Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated than unvaccinated. If you are fully vaccinated your chance of being Aspergers is no greater than if you were unvaccinated.

Number of boys and girls with PDDNOS
Unvaccinated: 2% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have PDDNOS if you are unvaccinated. If you are fully vaccinated your chance of being PDDNOS is 1% less than if you were unvaccinated.

Number of boys and girls with Autism
Unvaccinated: 2% of total
Partially vaccinated: 4% of total
Fully vaccinated: 2%
Fully and Partially combined: 2%

Conclusion: you are 2% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

Number of boys and girls with all ASD’s
Unvaccinated: 4% of total
Partially vaccinated: 6% of total
Fully vaccinated: 3%
Fully and Partially combined: 3%

Conclusion: you are 2% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% less than if you were unvaccinated.

Overall conclusion: the best way to avoid being diagnosed with an ASD is to be fully vaccinated according to the CDC schedule.

And in September of last year, you may recall the announcement of yet another study that demonstrated there was no link between MMR and autism. During the press conference that launched that study David Kirby asked the lead author – Ian Lipkin – what his thoughts were about a vaccinated vs unvaccinated study. His answer was:

http://webjay.org/flash/dark_player

Very difficult if not impossible.

Given that, the US NVAC vaccine safety group released a draft of their latest thinking on the issue of vaccine safety which touched on the idea of doing this sort of study. The entire section related to this is quoted in full below:

Feasibility study of Vaccinated/Unvaccinated/Alternatively Vaccinated Children

Members of the public, stakeholders, and the Interagency Autism Coordinating Committee (IACC) have articulated interest in a study of vaccinated vs. unvaccinated children to determine if there are differences in health outcomes between groups with varying exposures to vaccines. The Working Group considered drafting a recommendation for an IOM review of the science, epidemiology and feasibility of studies of unvaccinated, vaccine delayed, and vaccinated children. The Writing Group Draft Document on Gaps in Research Agenda further developed this idea. The Working Group wishes to clarify several points on this topic. *First, the Working Group believes that the strongest study design, a randomized clinical trial that includes a study arm receiving no vaccine or vaccine not given in accord with the current recommended schedule, is not ethical, would not pass IRB review, and cannot be done*. The type of study that is being suggested would be an observational study of populations looking at natural variation in vaccination schedules including some children where vaccination is declined through parental intent. All children in the study should be recommended to receive the standard immunization schedule. The Working Group endorses the Writing Group’s recommendation for an external expert committee, such as the Institute of Medicine, with broad methodological, design, and ethical expertise to consider “strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs to examine outcomes in unvaccinated, vaccine delayed and vaccinated children and report back to the NVAC.”

The Working Group does not necessarily agree with all of the language in the Writing Group’s statement, but with its general intent. The process should be open and transparent, engaging individuals from a broad range of sectors. Considerations as outlined by the Writing Group and modified by the Working Group are as follows:

– This review should consider strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs and report back to the NVAC

– Consideration should be given to broad biomedical research including laboratory studies, and animal studies.

– Consideration should also be given to study designs comparing children vaccinated by the standard immunization schedule with unvaccinated children (by parental intention), and possibly partially vaccinated children or children vaccinated by alternative immunization schedules

– Outcomes to assess include biomarkers of immunity and metabolic dysfunction, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and other developmental disabilities such as epilepsy, intellectual disability and learning disabilities.

– The inclusion of autism as an outcome is desired. This review should also consider what impact the inclusion of Autism Spectrum Disorders (ASD) as an outcome would have on study designs and feasibility, as referenced in the IACC letter to NVAC.

– This review should be conducted expeditiously, in a transparent manner, and involving broad public and stakeholder input.

So, as per a straight ‘vaccinated vs unvaccinated’ study, Ian Lipkin and NVAC Working Group agree that it can’t be done in the most scientifically accurate way and even if it could, it wouldn’t be ethical due to the requirement of excluding children from vaccination.

What they are saying is that a group like the IOM therefore should write up a feasibility study as to how such a study _could_ be done. Without this, its extremely unlikely that a vax vs unvax study will ever fly.

Amusingly, the way that the NVAC Working Group words a possible solution – vaccinated vs unvaccinated via parental choice – sounds pretty much like the Generation Rescue phone survey. And we know how that ended up.

ASAN Submits Amicus Brief to the US Supreme Court

2 Jun

I have a very high level of respect for the Autism Self Advocacy Network (ASAN). They one of the few autism groups (if not the only one) that actively works with other disability organizations.

Below is a statement from ASAN on the submission of an amicus (friend of the court) brief for a case before the U.S. Supreme Court.

The Autistic Self Advocacy Network, along with several other advocacy groups, has submitted an amicus brief to the United States Supreme Court in the case of Winkelman v. Parma City School District. The lawsuit was brought by the parents of an Autistic child who was not given the opportunity to continue receiving occupational therapy services in an Ohio school after the district had agreed that those services were necessary. The school district prepared an IEP stating only that a further assessment of the need for the services would be completed.

The Supreme Court is seeking to resolve a conflict among the Circuit Courts of Appeals, which have taken conflicting approaches to the question of whether a court’s analysis of the content of an IEP should consider only the written IEP or whether the court has discretion to consider other evidence as well.

Parents play a major role in developing an IEP, which is analogous to a contract with the school district specifying the educational services to be provided to the child. Related services such as occupational therapy also must be specified in the IEP pursuant to federal law as set forth in 20 U.S.C. § 1414(d)(1)(A)(4). School districts are prohibited from making unilateral decisions about a child’s IEP.

Consistent with the general rule that in contract law, evidence outside the written terms of the contract ordinarily is not admissible in court, three Courts of Appeals have ruled that only the written IEP should be considered in determining whether it is adequate. However, three other Courts of Appeals, including the court from which the Winkelman case was appealed, reached the opposite conclusion in deciding that an IEP lacking the required specific content could nevertheless be found valid based on consideration of other evidence.

The Autistic Self Advocacy Network is asking the Supreme Court to rule that when courts analyze the content of an IEP to determine its adequacy, only the written IEP should be considered. A school district should not be allowed to omit required content from a child’s IEP and then to assert later that it intended to supplement the IEP. Allowing districts to postpone decisions on the content of an IEP can lead to considerable delay in providing occupational therapy and other necessary services. The educational well-being of Autistic children and other students with disabilities is best served when they receive therapy without interruption or delay.

ASAN contact information:

Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

New autism prevalence 1.5% in UK

31 May

A new study published (officially) tomorrow discusses ‘Prevalence of autism-spectrum conditions: UK school-based population study’.

Its an interesting study for quite a few reasons. Firstly, it offers a new autism prevalence of 1.5% (1 in 66). That’s the message that the press will no doubt focus on (and, as Kristina blogs, already have). And I’ve absolutely no doubt that our friends from JABS, Age of Autism and various other anti-vaccine fringe groups will be painting this as part of their ‘evidence’ that we’re in the throes of a massive autism ‘epidemic’.

However, the paper itself is very nuanced and is clear in its messages. However, to be absolutely sure I was correct in the conclusions I drew I had an email conversation with Professor Baron-Cohen before writing this entry.

Point 1: This study confirms the baseline rate of 1% as asserted by the Baird et al paper

Baird et al (2006) asserted that their findings would offer a baseline rate of autism prevalence, that prevalence being 1%. This figure was ascertained by looking at a SEN population of a South Thames cohort. Baron-Cohen et al (2009) confirmed that figure:

These authors took the decision to screen only the ‘at-risk’ population and assert that their estimate should be regarded as the minimum figure. Our results from screening the entire school-aged population support this assertion…

In other words Baron-Cohen et al also looked at the ‘at risk’ population and also found a prevalence of 1%.

Point 2: Baron-Cohen et al identify a further 0.5% to make a total prevalence of 1.5%

What is different about the Baron-Cohen paper is that as well as looking at the ‘at risk’ group they _also_ looked at mainstream schools. Using the CAST screening tool, this study identified a previously unknown prevalence of 0.5% within this mainstream environment.

Our results from screening the entire school-aged population…highlights the reality that there are children with autism- spectrum conditions, notably children with high-functioning autism, who remain undetected in primary schools. These children may use strategies to mask their social and communication difficulties such as going to the computer room at playtime. They may be quiet and cooperative at school and not difficult to manage and therefore teachers may not be aware that they have difficulties. Primary schools in the UK are typically small and foster a supportive and nurturing environment. It may not be until these children move to secondary school that their true differences are revealed.

Often I have heard people asking how it is possible that people with autism could possibly be missed. The Baron-Cohen et al paper gives a graphic answer to that question.

Point 3: Caution should be applied in assuming that results ascertained in Cambridgeshire could be applied across the rest of the country

The area is very affluent within the UK and has excellent autism resources for autistic children. It is a given that many families have moved into the area to try and exploit those services. This would have a positive effect on prevalence that is not consistent with the majority of the UK.

Our study does not report on migration of families but given the level of services for and awareness of autism-spectrum conditions in Cambridgeshire, this remains a distinct possibility. Caution should therefore be employed in assuming that the figures reported here can be applied nationwide.

Professor Baron-Cohen and I had the following exchange about the autism ‘epidemic’:

KL: What would you say to someone who says that your paper is strong evidence of an ‘autism epidemic’ (because you know they will)?

SBC: I think the term ‘epidemic’ of most value in relation to contagious diseases, which autism is not.

KL: Can I rephrase my question? Would you say your findings support the idea that there has been a true rise in prevalence? As oppose to the seven items you say have caused a seeming rise in autism earlier in your paper?

SBC: There has been a real rise in prevalence but what is at issue are the causes of this rise. In the paper we summarize the quite ordinary factors that might have driven the rise, such as better recognition, growth of services, and widening diagnostic criteria.

So next time someone who likes to bandy about the phrase ‘epidemic denier’ like he knows what he’s talking about when he claims that the ‘epidemic deniers’ say that autism is just better recognised these days, tell him there’s a lot more than just one reason:

Prevalence estimates for autism-spectrum conditions have shown a steady increase over the past four decades. In 1978, the consensus estimate for classic autism was 4 in 10 000; today autism-spectrum conditions (including classic autism) affect approximately 1% of the population. This massive increase is likely to reflect seven factors: improved recognition and detection; changes in study methodology; an increase in available diagnostic services; increased awareness among professionals and parents; growing acceptance that autism can coexist with a range of other conditions; and a widening of the diagnostic criteria.

Autism Minnesota Somali community see through anti-vaccine brigade

29 May

In November last year, David Kirby wrote a Huffington Post entry about the Minnesota Somali autism situation saying:

In fact, one of the most obvious “environmental” differences between Minnesota and Somalia is mass vaccination…

And of course, the Age of Autism site, made many proclamations about the Somali community and vaccines:

Somali parents, I offer this advice as the father of a son with autism. Like many of you, I watched my normal son descend into autism after receiving his vaccines. I genuinely believe too many vaccines given too soon in our children’s lives is the primary trigger for the autism epidemic

However it seems that maybe the Minnesotan Somali autism population have done their own reading and come to their own conclusions.

The Somali American Autism Foundation is a new-ish Foundation. The domain name was created in Feb 2009 for example. Pretty much in the middle of the period that the Age of Autism crew were waxing lyrical about standing shoulder to shoulder with their Somalian friends in the battle against vaccines.

One of the founders of the SAAF, Idil Abdull, has this to say:

When my son Abdullahi was first diagnosed with autism at age three, I felt angry, sad and confused because I have never heard of the word Autism before. I had no idea what to do next and how to help my son. A mother’s job is to help her child with whatever life throws at them, but when the doctor told me there is no known cause and cure for autism, I felt helpless and hopeless.

I remember crying for what seemed forever. After I realized to be thankful that god blessed me with a beautiful son, I saw the hope in him and the help he needed from his mother. I rolled up my sleeves and went to work by reading every autism book I could find and going online for any help to give my son the hope he and countless others need and deserve. I would not change a thing about my son Abdullahi. He is a happy and loving child and I thank god everyday for him. There is HELP and There is HOPE not just for my son but for all of our children.

Now thats a pretty fantastic, positive and…yep, neurodiverse, type of message don’t you think?

But there’s more.

The SAAF website carries a detailed explanation of what a vaccine is and how they were first started. It takes away a lot of the negative mystery and states:

There is a strong minority of people who believe that the increasing rates of autism and learning disabilities in the U.S. are related to its mandatory immunization program. There is still no credible evidence of a correlation between autism and vaccinations. This position is supported by the World Health Organization, the CDC, The AMA, and the American Academy of Pediatrics.

They then recommend that a parent talk to their physician. What simple, credible and good advice.

I’d like to welcome The SAAF to the growing community of autism organisations that are clearly fed up with a constant preoccupation with a disproven hypothesis. Maybe it would be a good idea for SAAF and the newly created Autism Science Foundation to talk together.

Circling the Wagons

29 May

The alternative medicine community is certainly loyal to their own. This seems especially true in the world of Autism where no idea is ever abandoned, no practitioner ever criticized.

After the Chicago Tribune published articles on the Geiers (and here), as well as Dr. Mayer Eisenstein, it was a forgone conclusion that the community would close ranks.

These articles were published right before the AutismOne conference–which chose to honor Andrew Wakefield after news was released that he may have altered his data. See what I mean? No quicker way to be a hero than to have really the skeletons in your closet made public.

The most basic response was from Kim Stagliano, who let this tweet on Twitter:

From Kim: Chicago Trib is close to dead. Suddenly launches full frontal attack on autism during Autism One. AAP in backyard. They hear us.

Yes, the Tribune is bad and in the pockets of the AAP and the AAP are evil. Please.

Dan Olmsted came out rather quickly with a piece in the Age of Autism blog in defense of the Geiers and Dr. Eisenstein. Later, Anne Dachel did another piece.

Both use a simple contrivance: avoid the real questions raised by the article. Instead, write about “what the Tribune story should have included”. This is especially true of Anne Dachel, who went on and on over pretty much all the media talking points of the vaccines-cause-autism movement.

For example, both Mr. Olmsted and Ms. Dachel thought the Tribune should have discussed Dr. Bernadine Healy. The connection to the story? None. But, Dr. Healy is vitally important to the story Olmsted and Dachel want to tell. See what I mean?

Dan Olmsted’s method sidestepping of the real questions was rather poorly done. In his piece, he writes:

The article lumps Lupron — about which I know nothing, and have no opinion — in with alternative approaches like diet, about which I do know something, and do have an opinion.

Frankly, I found this a ridiculous statement. Dan Olmsted was attending the AutismOne conference–a conference which for years has hosted talks by Mark Geier on Lupron and which Dan Olmsted has attended for years. I guess he missed the Geier talks?

It isn’t as though Mr. Olmsted isn’t able to form an opinion on scant data. Mr. Olmsted has shown a particular interest in Kathleen Seidel–to the point where Mr. Olmsted “diagnosed” her kid with mercury poisoning based on a paragraph in the book Autism’s False Prophets. From only a snippet (wrongly interpreted by Mr. Olmsted) about one of Ms. Seidel’s previous jobs, Mr. Olmsted claimed that she had high levels of mercury, and further stated:

Laugh me off if you want, but I have spent a lot of time looking for plausible links between parents’ occupations and autism in their children, and I know them when I see them.

So, he’s willing to go out on a limb based on a few words in a book, but, say, the page after page that Ms. Seidel wrote about the Geiers and Lupron (e.g. here, here and here) left no impression?

Sorry, Mr. Olmsted. I know ’em when I see ’em too. I see you dodging really tough questions about the Geiers in an effort to protect one of the big names in autism psuedoscience.

To further point out how silly the “about which I know nothing, and have no opinion”, one of the readers of that blog piece pointed out:

Dan, last year AoA published a post from Kent Heckenlively entitled “MERCURY, TESTOSTERONE AND AUTISM – A REALLY BIG IDEA!” In the comments, you said that you had gone to the Geiers’ house and witnessed a child receive a Lupron injection and improve immediately. You “just had to put this on the record,” you said.

I take the fact that Mr. Olmsted has gone from Lupron shill to even this weak distancing himself from Lupron (“I know nothing”) as a good sign. Even Dan Olmsted must be seeing the cracks in the Lupron Logic.

Ms. Dachel does her own “two step” around the question of her real opinion on Lupron.

Let me say that I’m not an expert on any of the medical aspects of this; I’m merely an observer. So here’s what I’m seeing.

Since when does not being an expert on the medical aspects stopped anyone at the Age of Autism blog from making very clear opinionated statements?

But, again, I take the clear signal that she is willing to distance herself from Lupron as a small, but positive sign.

So, let me use their contrivance–let me list what Mr. Olmsted and Ms. Dachel should have written about in their blog pieces. Let me list many of the real questions raised by the articles in the Tribune. As you read this list, it will become obvious why the Olmsted/Dachel tag-team avoided these questions: these are serious questions about people possibly harming children with autism and Dan Olmsted and Anne Dachel don’t have answers to these questions.

At least, they don’t have answers which would satisfy their readership.

Here is the list of questions I had after reading the Tribune articles:

1) Are parents still being sold the idea that Lupron will help remove mercury from their autistic children?

2) Are parents still being told that mercury causes autism? (OK, we all know the answer to that one. The answer is yes. No amount of data will convince Mr. Olmsted.)

3) Are the diagnoses of “precocious puberty” valid? Would a real pediatric endocrinologist agree with the Geier’s assessments? From the Tribune, quoting an actual expert in precocious puberty:

None of the data verify or even suggest that any of these patients have precocious puberty.

4) What is the purpose of all the extra lab tests the Geiers are performing? Are they for the Geiers’ research? If so, why should the parents (or their insurance) foot the bill?

5) Why do the Geiers use 10 times the normal dosage of Lupron?

5) Is Lupron being used as a chemical restraint?

6) Does Lupron even work well enough to warrant its use? Given that Dr. Eisenstein is reported to be close to dropping Lupron, it clearly isn’t a “miracle drug”.

7) what are the side effects of extended use of Lupron. Especially, what are the side effects of wrongly delaying puberty? According to the Tribune story:

Experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children’s hearts and bones at risk.

8) Why don’t the Geiers recommend patients to see board certified pediatric endocrinologists?

9) If precocious puberty is so prevalent amongst children with autism, why don’t pediatric endocrinologists see it? According to the Geiers:

Mark Geier responded that these are “opinions by people who don’t know what they are talking about,” saying the pediatric endocrinologists interviewed by the Tribune don’t treat autistic children and have not tried the Lupron treatment.

10) What about older kids the Geiers are treating? Are they being correctly diagnosed? From the Tribune story:

David Geier said his father diagnoses high-testosterone teens not with precocious puberty, but with another very rare condition: testicular hyperfunction.

How does “testicular hyperfunction” explain the older girls the Geiers have treated?

11) The effects of Lupron on sex hormones are temporary. Stop the shots, the hormones return. The loss of the beneficial effects of puberty are permanent. Does the trade off make sense?

And that is just the list of questions based on the article on the Geiers. Then there is the story about Dr. Eisenstein. This too raises a number of tricky questions.

1) Is Dr. Eisenstein a credible resource for information? After reading the article, one has to question that.

2) Would people like Anne Dachel, Kim Stagliano and Dan Olmsted recommend people see a physician whose malpractice insurance may be “phony”?

In court records dating back three decades, the families of dead and brain-damaged children repeatedly alleged that doctors who work for Eisenstein made harmful mistakes — sometimes the same error more than once. His practice also has been dogged by accusations in court records that its offshore malpractice policy was phony.

3) Would Is Dr. Eisenstein’s record of selling “illegal” health insurance troublesome?

He also dabbled in group health plan sales to Illinois families but tangled with state insurance regulators in the mid- to late 1990s. Regulators warned consumers in a newsletter that Eisenstein “continued to illegally market” the Homefirst Health Plan, based in the British Virgin Islands, even after they told him the plan was ineligible. Despite this, he continued selling the plan, records show, and they ordered him to “cease and desist.”

4) Dr. Eisenstein seems to be good at blameshifting. In this case he accuses the parents of making a mistake that appears to be clearly that of his colleague at HomeFirst. Is this the sort of doctor parents of autistic kids should be seeing?

A Homefirst doctor took a sample of blood from Na’eem’s umbilical cord that could have been used to diagnose the problem and could have led to prompt treatment, according to court testimony. But instead of dropping off the sample at the lab, the doctor said under oath, he was tired, went home and put the sample in his refrigerator, where it sat the whole weekend.

In an interview, Eisenstein blamed the parents for not taking the baby to the emergency room for a blood test. Na’eem’s parents testified that no one from Homefirst ever told them to go to the emergency room.

5) Dr. Eisenstein appears to make some rather questionable decisions about insuring his own practice. Also, it appears from this quote that perhaps he has gone without malpractice insurance. Again, is this the sort of doctor parents of autistic children should be using?

After Nathan Howey’s death, Weiss Hospital sued Homefirst, Rosi and Eisenstein for fraud, alleging they misrepresented their Caribbean-based malpractice policy. Eisenstein testified that he was in St. Kitts helping one of his daughters, a veterinary student there, buy a condo when the lawyer who helped arrange the sale told Eisenstein he also sold malpractice insurance.

“I was tickled pink to get insurance,” he said under oath.

A Cook County judge called it an “improperly underwritten insurance plan.” Eisenstein, who says the policy is legitimate, agreed to pay Weiss $50,000 after mediation.

6) Dr. Eisenstein appears to have inflated his credentials:

Eisenstein said under oath that he was a faculty member at the Hinsdale Hospital Family Practice Residency Program from 1992 to 2003. A hospital administrator testified that Eisenstein “never was” a faculty member. In a recent interview, Eisenstein said that while he wasn’t a faculty member there, he did teach students from that program and kept snapshots of them.

(anyone else reminded of Vera Byers, witness for the petitioners in the Omnibus, who claimed to be faculty at UCSF? In reality, she used the library and attended parties there.)

7) Lastly, is this the type of doctor we should be taking our kids to?

Reflecting on the $1.275 million malpractice settlement, he appeared unshaken.

“It’s the cost,” he said, “of doing business.”

I’m sure the parents were glad to hear that their kid’s life was “the cost of doing business”.

There are a lot of questions raised by these stories. Hard questions. Questions Mr. Olmsted, Ms. Dachel and Ms. Stagliano should answer if they want to really serve their readership.

Autism Progresses in Parliament

28 May

A few weeks ago I attended the Northern Regional Forum of the National Autistic Society. The general feeling was that all those working around the private member’s bill on Autism then before Parliament had done a fantastic job. The government was talking to us and, more importantly, listening to us. The Bill of course would never become law but we could expect signficant concessions from the government in exchange for the Bill being dropped.

Instead the government proposed to delete the existing clauses in th eBill and replace them with amendments of its own covering

  • Transition Planning
  • Diagnosis
  • Identification and Assessment
  • Provision of Services
  • Training of Professionals
  • Local Authority/PCT Leadership

These amendments were acceptable to the Bill’s supporters and it will now progress through Parliament with government support. It is thus more closely focused on adult proivision. Provisions relating to children, including diagnosis, data collection and planning services will be enacted via regulations and guidance issued by the government a part of its Children and Young People’s Plan.

There is still a lot of work to be done. The government consultation that I wrote about last month is continuing and it is even more important now for people to respond.

Meanwhile, another private member’s bill from John Bercow on special educational needs that only came 19th out of 20 in a poll of MPs has failed to become law but the government has given assurances that it is making progress on meeting the commitments outlined in the Bill. The NAs was again involved in drafting the Bill and lobbying for its support.

the National Autism Society, which had worked with Bercow on the Bill, said it was satisfied that the Bill had achieved some success.

NAS policy manager Beth Reid said: “This Bill has helped to raise the profile of many important issues facing SEN children. It has put increased focus on making sure the right measures are in place to ensure they are support properly.”

However, Reid said more work was needed to bring down the high number of SEN children [whch contains a disproportionate number of autistic children] excluded from school, something Bercow’s Bill had sought to address.

This is important work. These are not grandiose schemes for combating autism, defeating autism or ramping up research efforts into possible causes and cures. But they are honest attempts to improve the lives of autistic children and adults. The NAS and its allies will continue to monitor the government response to ensure that its deeds do in fact match up to the commitments it has made in response to our campaigning.

Autism Science Foundation are blogging

28 May

Just a quickie. Autism Science Foundation are now blogging. So far there’s only one post up but already our very own Sullivan has got in there to comment. I’d love to see some autie opinion making a splash on there!

ASF also have their own Facebook Group for those who like to get their social media on. Oh yeah, lets not forget the website whilst I’m giving out link love.

Autism/vaccine activists likened to AIDS denialists

28 May

One of my big worries is that the public will someday turn against the autism community. We, and all segments of the disability community, all rely heavily on the public’s good will. One way we could lose that is if epidemics of infectious disease return and people point the fingers at “autism spokesperson” Jenny McCarthy. We as a group could be in for some real trouble.

One reason to blog and advocate against pseudoscience and dangerous celebrity advice is to make it clear that the autism community as a whole is not behind Jenny McCarthy and her crowd.

So you can imagine the dismay I feel when I search for autism related articles in the Nature journals and I hit upon this one, The dangers of denying HIV.

Why would that article come up using the search word “autism”, I wondered. AIDS denialism is a truly horrible movement in the world. It leads, quite clearly, to disease, suffering and death. Probably no where is AIDS denialism more a problem than in South Africa. The author of this brief note in Nature, Seth Kalichman, notes:

Inadequate health policies in South Africa have reportedly led to some 330,000 unnecessary AIDS deaths and a spike in infant mortality, according to estimates by South African and US researchers. This carnage exceeds the death toll in Darfur, yet it has received far less attention.

This is, he argues, due in large part to AIDS denialism–promoting the idea that HIV does not cause AIDS and encouraging people to forgo treatement.

The tragic events in South Africa have been exacerbated by AIDS ‘denialists’ who, Kalichman alleges, assert that HIV is harmless and that antiretroviral drugs are toxic. The author discusses the psychology of denialism, which he says is “the outright rejection of science and medicine”.

Dr. Kalichman makes it very clear that denialists are acting outside of the boundaries of decency:

Kalichman dismisses denialists’ attempts to portray themselves as intellectually honourable dissidents who question accepted wisdom. He draws clear distinctions between dissidence and denialism; the latter, he says, is merely a destructive attempt to undermine the science.

What does this have to do with autism? Dr. Kalichman groups vaccine-autism groups in with AIDS denialists in their tactics:

Groups that support intelligent design, doubt global warming, claim that vaccines cause autism, argue that cigarettes are safe, believe that the terrorist attacks of 11 September 2001 were an intelligence-agency plot or deny the Holocaust all use similar tactics.

That is an “ouch” moment. To see that the outside world is starting to group autism activists with so many denialst groups is troubling, to say the least. If there are more outbreaks of disease that can be tracked back to vaccine rejectionism sparked by autism groups (for example, recent outbreaks of whooping cough), we are in for a public relations nightmare.

If you don’t think the analogy to AIDS denialists is well earned, consider this passage:

Kalichman describes how quacks, like some of the academics involved, misrepresent their qualifications to create an illusion of authority. One, he claims, treats AIDS with hyperthermia, massage, oxygen, music, colour, gem, aroma, hypnosis, light and magnetic fields, each word followed by “therapy”.

We have certainly seen inflated qualifications and the list of therapies could easily be attached to autism.

It isn’t as though Dr. Kalichman hasn’t read up on autism, either. He concludes his piece with:

Action might have widespread benefits: Paul Offit’s tour de force, Autism’s False Prophets, claims that pseudoscientists and quacks have used similar tactics to parasitize the suffering of desperate parents by persuading them that vaccines cause autism. As Kalichman says, denialism “will not break until the public is educated to differentiate science from pseudoscience, facts from fraud”.

“denialism will not break until the public is educated to differentiate science from pseudoscience, facts from fraud”

I wonder if that time will ever come?

Bravo Huffington Post

28 May

Yep, you read correctly. I’m not even sarcastic.

Guess who the new Huffington Post blogger is? Ari Ne’eman of the Autistic Self Advocacy Network.

Ari’s first post is a good one, Health Care Reform and the Disability Community. Ari has done an excellent job of keeping focus on the real issues facing the disability community in general and the autism community in specific. Ari recognizes that we in the autism community are a part of a greater whole–the disability community.

Ari’s post is quite thorough, quite well thought out. He is factual and logical.

Take a moment and leave a comment–let him (and the Huffington Post) know how much we appreciate him fighting for our communities.

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