Archive | April, 2013

Andrew Wakefield: Now, what about that debate?

30 Apr

Today we have another article by autism parent and general practitioner Michael Fitzpatrick. In his article, Andrew Wakefield and Vaccine Safety, Dr. Fitzpatrick discusses how Mr. Wakefield’s claims about the MMR are without merit.

Mr. Wakefield has been in the news lately as Wales faces a major outbreak of measles. Mr. Wakefield is facing criticism for the predicted results of his claims about the safety of the MMR vaccine, and his suggestion that the MMR vaccine be set aside. Recently Mr. Wakefield put out a challenge to debate “any serious challenger” on the safety of the MMR vaccine.

Dr. Fitzpatrick is a general practitioner in London, autism parent and author of the book MMR and Autism: What Parents Need To Know. Dr. Fitzpatrick accepted Mr. Wakefield’s debate challenge, but Mr. Wakefield has not responded.

By Matt Carey

Andrew Wakefield and Vaccine Safety

30 Apr

All about Andy

Even if everything Andrew Wakefield says about the safety of MMR were true it would still not advance the claim that it causes autism.

Having failed, over the past 15 years, to come up with evidence for his theory of a link between the MMR vaccine and autism (or even for his original claim of a link between measles virus and inflammatory bowel disease), Andrew Wakefield has resorted to making wider (and wilder) claims about the safety of MMR. Moving away from his former field of academic gastroenterology, Wakefield has embarked upon studies in paediatrics, vaccinology and public health. These are spheres in which he has neither expertise nor experience – and it shows. He has alleged that surveys associated with the introduction of MMR in Britain 25 years ago were methodologically inadequate, too small in scale, too short in duration or otherwise unsatisfactory. He claims that evidence of adverse reactions was suppressed, conflicts of interests among public health authorities were undisclosed and whistleblowers were silenced. Critics of the programme are alleged to have had their phones tapped, their homes burgled and to have been persecuted by the medical/political/pharmaceutical establishment. Most recently Wakefield has claimed that procedures for dealing with potential anaphylactic reactions within the MMR programme were inadequate.

I do not intend to revisit here the case against Wakefield’s claims about the safety of MMR which is presented in my book MMR and Autism: What Parents Need To Know. (1)On the red-herring of anaphylaxis, including a report of a curiously high incidence in association with separate measles vaccine in a private clinic, see these studies. (2,3,4) Here I would like to pose three questions that arise for anybody who accepts his allegations about the introduction of MMR in Britain after 1988.

1. What about the other countries in which MMR has been introduced?

Surely, if there are significant dangers associated with MMR – which were supposedly ignored in Britain – these would have been noticed in the 60 countries in which the vaccine has been introduced (both before and after 1988)? In fact, the excellent safety record of MMR – 500 million doses and counting – is a major reason for its successful worldwide use. Several countries in Europe and the Americas have been able to declare measles eradicated, apparently without experiencing the sort of adverse effects Wakefield and anti-vaccine campaigners have attributed to MMR in Britain. Indeed, even if public health authorities had succeeded in suppressing reports of adverse reactions to MMR 20 or 25 years ago, these must surely have become apparent by now?

2. Did MMR not dramatically reduce the incidence of mumps meningitis (even if one strain of the vaccine caused a small number of cases)?\

One of the recurring complaints of Wakefield and his supporters is that in the early years of the programme, British vaccine authorities used a brand of MMR including a strain of the mumps virus (Urabe), which was associated with a small number of cases of meningitis, a recognised complication of mumps. In 1992 this was replaced by another strain (Jeryl Lynn) which does not cause this problem. However, if the Jeryl Lynn strain had not been available, it would still have been preferable to carry on with the MMR including Urabe because the benefit of dramatically reducing the incidence of mumps (in the 1980s the commonest cause of viral meningitis) far exceeded the risk of vaccine-related meningitis. A judgement of this sort was made for many years in relation to the use of the oral polio vaccine which caused a handful of cases of polio every year (until it was finally replaced by the currently used injected polio vaccine, which does not carry this risk).

3. Even if MMR is shown to be unsafe in general, how does this support the specific claim that it causes autism?

Wakefield’s strategy appears to be that, if the safety of MMR in general can be put in doubt, the credibility of any particular risk attributed to the vaccine is raised. In reality, this strategy merely draws attention to his failure – over 15 years – to produce any evidence in support of the MMR-autism theory.

Given his failure to substantiate the MMR-autism hypothesis, Wakefield’s persistence in his campaign against MMR has acquired an increasingly irrational character, confirmed by his bizarre video diatribes against leading figures associated with the MMR programme. He is still bitterly aggrieved that British authorities did not accede to his preposterous demand (issued at the notorious 1998 press conference to launch his now retracted Lancet paper) for the replacement of MMR with separate vaccines given 12 months apart. Not a single member of his own team supported this proposal, which was not included in the paper and was in no way supported by it. Such a scheme has never been implemented in any country. Wakefield is further incensed that vaccine authorities insisted on upholding the integrity of the MMR programme in face of his proposal.

If Wakefield had any experience of child health he might have a better understanding of the importance of the organisation of a vaccine programme. Before the introduction of MMR, a measles vaccine had been available in Britain for 20 years, but its administration was unsystematic, uptake remained unsatisfactory and outbreaks continued to occur. In a similar way, rubella vaccine had been given to schoolgirls with considerable success, but occasional cases of congenital rubella were still reported. Mumps vaccine had never been made widely available and cases were seen commonly in surgeries and hospitals. The introduction of the new combined MMR vaccine – within a comprehensive administrative framework, inviting parents into clinics when their children’s jabs were due, properly recording them – brought within a few years a dramatic improvement in children’s health.

If Wakefield had seen, as I have, children suffering from measles, or if he had admitted children to hospital, as I have, with mumps meningitis, or if he had cared for adults with the multiple handicaps of the congenital rubella syndrome, as I have, he might not be so casually disparaging of the MMR programme. But, unfortunately, for Wakefield it is all about Andy and his petty personal grudges against the vaccine authorities who have quite properly put children’s health before his combination of bad science and egotism.

Now, what about that debate?

1. Michael Fitzpatrick, MMR and Autism: What Parents Need To Know, Routledge 2004; p 128-133.
2. Lakshman R, Finn A (2000). MMR vaccine and allergy, Arch Dis Child 2000;82:93-95 doi:10.1136/adc.82.2.93.
3. Erlewyn-Lajeunesse M, Manek R, Lingam R, Finn A, Emond A (2008). Anaphylaxis following single component measles and rubella immunization, Arch Dis Child 2008; 93:974-975. doi:10.1136/adc.2008.138289;
4. Erlewyn-Lajeunesse M, Hunt LP, Heath PT, FinnA (2011). Anaphylaxis as an adverse event following immunisation in the UK and Ireland, Arch Dis Child 2011; doi:10.1136/archdischild-2011-301163.

By Michael Fitzpatrick

A few points about Steve Walker’s measles/autism study

30 Apr

Michael Fitzpatrick is a general practitioner and autism parent in the U.K. who has been countering misinformation for over a decade. His books include Defeating Autism: A Damaging Delusion and MMR and Autism: What Parents Need to Know. Dr. Fitzpatrick offered to take Andrew Wakefield’s recent challenge for a public debate. Mr. Wakefield has not responded.

One report of a replication of key finding by Andrew Wakefield’s team was presented at an IMFAR conference in 2006but never published. Even though it has not been published, and has in fact failed to replicate, that work by Steve Walker is often cited by Mr. Wakefield’s supporters.

Below are a series of points Dr. Fitzpatrick has collected in regards to the Walker study.

Matt Carey

‘It [the Children’s Immunisation Centre – offering single measles vaccines] argues that the MMR vaccine can cause autism, saying: ‘In 2009 a Dr Walker in the USA studied 275 autistic children and found in a large percentage of cases that these children had the live measles virus in their gut after vaccination with the triple MMR’.Sunday Times, 21 April 2013.

1. In 2006 Dr Stephen Walker presented a poster at the Montreal IMFAR meeting claiming to have identified measles virus in intestinal biopsies of children with autism. These preliminary, provisional, unconfirmed, non-peer-reviewed findings in an uncontrolled study (which does not mention MMR) were widely reported – and enthusiastically acclaimed by Dr Andrew Wakefield.

2. In a subsequent statement issued by Wake Forest University Baptist Medical Center in North Carolina, Walker denied that he had shown any link between measles virus and autism.

3. The Walker study has never been published.

4. The Walker study was dismissed as evidence in the 2009 Omnibus Autism Proceedings in the USA after a detailed critique by expert witnesses.

5. The Walker study is not included in a recent list of ‘28 studies from around the world that support Dr Wakefield’s work’ (though none of these validate his claim of a link between MMR and autism).

6. Though reports claimed that the Walker study had ‘replicated’ the work of Wakefield’s Dublin collaborator John O’Leary published in 2002, this work has been thoroughly discredited, most comprehensively by Professor Stephen Bustin (and is no longer even claimed by Wakefield in his support).
(Stephen A Bustin, Why There Is No Link Between Measles Virus and Autism, DOI: 10.5772/52844)

7. A co-author on the 2006 Walker study (and on his recent, unrelated, 2013 publication) is Dr Arthur Krigsman, a long-standing colleague and supporter of Dr Wakefield (and collaborator in his current Autism Media Channel initiative).

Observations on Dr Krigsman by the ‘Special Masters’ in the Omnibus Autism Proceedings 2009:

‘After studying the extensive evidence in this case for many months, I am convinced that the reports and advice given to the Cedillos by Dr Krigsman and some other physicians, advising the Cedillos that there is a causal connection between Michelle’s MMR vaccination and her chronic conditions have been very wrong. Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment.’

Dr Krigsman appeared as both expert witness and as ‘treating physician’ to Michelle Cedillo and Colten Snyder. The special masters found that his credentials were ‘scant’ and noted that though he claimed to be ‘assistant clinical professor’ at New York University he had never taught there. His four publications were reduced on inquiry to one. It emerged that he left New York following disciplinary action at his former hospital and was fined $5,000 on arrival in Texas for misrepresenting his registration status.
The special masters were not impressed by Dr Krigsman’s performance as an expert witness. Hastings commented that in the Cedillo case he ‘did not find Dr Krigsman to be an expert upon whom I could reasonably rely for sound opinion and judgment’.

It was in relation to his personal testimony as Michelle’s doctor that Hastings found Dr Krigsman to be most ‘unpersuasive’ and of ‘doubtful credibility’. He was shocked to discover that he had ‘presented an opinion concerning Michelle’s case either without examining Michelle’s medical records at all, or after badly misreading these records’. He noted that Dr Krigsman had ‘diagnosed Michelle with “inflammatory bowel disease” in July of 2003, before he had even met and examined her’. Hastings further noted that ‘Dr Krigsman seems highly inclined to diagnose the presence of gastrointestinal inflammation on the basis of almost any chronic gastrointestinal symptoms’. He concluded that Dr Krigsman had advanced a ‘grossly mistaken understanding of Michelle’s gastrointestinal symptoms’ and that ‘a simple reading of Michelle’s medical records demonstrates that Dr Krigsman’s understanding was clearly wrong’. Michelle endured five upper gastrointestinal endoscopies and three lower gastrointestinal endoscopies, none of which in the opinion of the respondent’s experts, revealed inflammatory bowel disease.

Michael Fitzpatrick 23 April 2013

An example of why protections must be in place for special education funding

22 Apr

Federal law requires that schools do not reduce support for special education. School can reduce support, but if and when they do they face penalties. The Federal Government has never lived up to its obligation to pay for 40% of the costs of special education. This results in the view by some school officials that special education is an unfunded mandate.

Here’s a hint: education is an unfunded mandate. Education for all is required by law and not paid by the federal government.

Why write about this now? Because of a guest column to a small newspaper in Southern Illinois: Mark Lounsberry: Special-education costs can’t continue.

Mr. Lounsberry is a former president of their board of education. He decrys the costs of special education. In discussing laws which require localities to educate their students, he notes:

The most draining of these are the special-education statutes, both federal and state.

He notes:

They require costly individualized educational plans for the mentally, physically and learning-disabled. Failure to comply invites lawsuits and withdrawal of funding.

Yes, if they don’t educate special needs children they lose funding. If they don’t educate non special education students they will face lawsuits and loss of funding as well.

Mr. Lounsberry feels that behavior disorders are sapping the budget:

These days behavior disorders are included as a part of special-education programs. Most of these problems are a direct result of our crumbling family structure and have swelled the enrollment of special education.

Yes. Bad family structure leads to special education. Bruno Bettleheim is invoked too often in online discussions, in my opinion. But this time we are seeing shades of Bettleheim.

He also notes:

When our budget is reduced and the state does not meet its financial responsibility to our district, we still are required to meet 100 percent of the financial needs of our special-education students.

Small correction (OK, not small): they are required to meet the educational needs of their special education students, not their financial needs.

And, now for the value judgement:

For those not protected by mandate, including our best and brightest, who presumably will be our community leaders and problem solvers, the resources are disproportionately reduced.

Yes. Those who are not in special education are the “best”.

I can’t wait for one of them to grow up and take over the leadership position Mr. Lounsberry appears to leave vacant with his presence.

In case you think I’m stretching the value judgement statement above:

Our education tax dollars would be easier to manage if not burdened with expenses that are more suited for social welfare.

How did someone so ignorant about education become the president of the school board? Seriously?

OK, disabled children are a “burden” to him and do not deserve to be educated. Instead they are a social welfare situation. (why do I doubt he would be willing to pay tax money for the social welfare of the disabled?)

He concludes with:

Education budgets are voted down and local school boards are told to spend dollars more wisely while they have little control over how they must spend their money.

Spending money to educate children is spending it wisely, Mr. Lounsberry. Spending money to educate “the best” as well as the disabled.

This sort of ignorance is precisely why we had no education for the disabled for most of our history. It is only in my lifetime that we as a people recognized our responsibility. Without federal laws protecting special education funding, the Mr. Lounsberrys of the world would eject those with special needs to the (non existent) social welfare system.

By Matt Carey

Autism Science Foundation hosts live chat with David Amaral and Jill Locke tomorrow (Friday)

19 Apr

The Autism Science Foundation hosts live chats on Fridays during April. Tomorrow they will have chats with David Amaral (of the U.C. Davis MIND Institute) at 12noon eastern time and Jill Locke (of U Penn) at 2pm eastern time. The chats can be found at the ASF website.

By Matt Carey

Sun Times: Lawsuit alleges school bus aide slapped autistic boy

19 Apr

The Chicago Sun Times reports Lawsuit alleges school bus aide slapped autistic boy.

A mother noticed her child was resisting going on the school bus so she put a voice recorder in his backpack. She recorded an aide slapping her child. Twice. There are indications that perhaps the child was potentially doing something inappropriate as evidenced by the statement:

“Get your hands off my chest or I will break your fingers. Word,” before hitting him again, the suit claims.

If so, the aide should have reported the behavior for the child to get help. Instead, apparently, she hit him.

This follows on a story a year back about a New Jersey father who found that aides in his son’s class were apparently acting inappropriately and were verbally abusing his son. A more recent story discussed putting video in special education classrooms.

There is a significant difference between children in regular education and children in a classroom where most or all have significant communication disabilities. In a regular education environment, a parent could get information about what happens in the class from the child. The child can report back (although, sadly, often abusers understand that children will not speak about the abuse). There is no such window into a classroom of children without the ability to effectively communicate.

By Matt Carey

Mike Fitzpatrick calls Andrew Wakefield’s bluff. Wakefield moves goalposts

17 Apr

As recently noted here at Left Brain/Right Brain, Andrew Wakefield asked to debate someone about the MMR vaccine. In specific, he wrote:

The more light that shone on this subject by way of informed, balanced debate, the better. I am offering to debate any serious challenger on MMR vaccine safety and the role of MMR in autism, live, in public, and televised.

Dr Michael Fitzpatrick wrote in Andrew Wakefield: return of the wicked witch, Wakefield’s MMR-autism nonsense had a baleful influence on public health, but he doesn’t bear sole responsibility for recent measles outbreaks. that he would take Mr. Wakefield’s challenge.

As both a GP and a parent of an autistic son who had followed the destructive consequences of Wakefield’s campaign over the past 15 years, I for one would welcome the opportunity to challenge his baleful influence. Are you ready for a debate now, Andrew Wakefield?

As you might surmise from the wording above, Dr. Fitzpatrick has previously attempted to debate Mr. Wakefield and offered to engage in a full debate:

Wakefield has subsequently restricted his public appearances to conferences of sympathetic parents, anti-vaccination activists and promoters of quack autism therapies. When I asked him a question from the floor at one such conference in Bournemouth in February 2007, he simply refused to answer, deferring to another platform speaker. When I offered to debate with him at a follow-up conference in March 2009, the organisers refused.

How has Mr. Wakefield responded?

What I’m suggesting is a formal scientific debate in public in front of an audience that is televised. And specifically Dr David Salisbury I would like to debate you because I believe you are at the heart of this matter. I believe the decisions taken by you and by your committee, the Joint Committee on Vaccination and Immunisation, lie at the heart of this matter.

Yes, having had his bluff called, Andrew Wakefield moves the goalposts. He won’t take on Mike Fitzpatrick. He won’t take on “any serious challenger”. Only Dr. David Salisbury.

In addition to lacking integrity, Mr. Wakefield now shows that he lacks courage.

Mike Fitzpatrick is a physician. He is an autism parent. He has written two books on autism: MMR and Autism: What Parents Need to Know and Defeating Autism: A Damaging Delusion. Hard to find a more “serious challenger”.

Hundreds of children are suffering from measles in the U.K.. This isn’t the time for empty offers of debate. This isn’t the time for publicity stunts. It’s time to own your mistakes and do what you can to fix the problems you helped create. Do you have that courage, Andrew Wakefield?

By Matt Carey

Andrew Wakefield: Don’t try to blame me for the results of what I said and did

17 Apr

Andrew Wakefield is back in the news. Sadly this is because the predicted outbreaks of measles are again occurring in the U.K.. As Dr. Michael Fitzpatrick points out, Andrew Wakefield is not the only one who helped spread unfounded fear of the MMR, but he is the man most responsible for promoting the idea that the MMR vaccine causes autism. Without Mr. Wakefield, the scare would not have happened.

Now, 15 years after Mr. Wakefield’s heyday, an outbreak of measles has hit south Wales. And the press are reminding us all that Mr. Wakefield’s research reports were wrong and that he acted unethically in the process of creating those reports. And Mr. Wakefield is responding with the blame shifting and goalpost moving that has become his standard. To their shame, a UK newspaper hosted Mr. Wakefield’s response. And he has gone direct to YouTube with a video where he lays out his explanation. And calls for a debate. Yes, a debate. Televised. Because that’s how science is decided, right? TV debates? If there weren’t children suffering and in danger, this would be a bad joke.

Dr. Fitzpatrick also points out that he has offered to debate Mr. Wakefield in the past and Mr. Wakefield refused. Dr. Fitzpatrick has offered to take Mr. Wakefield up on his debate request. So far I don’t see any signs from Mr. Wakefield that he’s going to take Dr. Fitzpatrick up on his offer. Mike Fitzpatrick has been countering Andrew Wakefield’s misinformation since the early days of the MMR scare.

Let’s step back a moment and ask how did we get to this situation where low vaccine uptake has resulted in a major outbreak? Well, 15 years ago Mr. Wakefield’s team at the Royal Free Hospital released a paper which suggested a link between autism and the MMR vaccine. Mr. Wakefield did much more than suggest a link. At the press conference for the paper’s release (note that very few papers have press conferences) Mr. Wakefield called for the suspension of the MMR vaccine in favor of single measles, mumps and rubella vaccines. He didn’t really explain why the single vaccine would be more safe in his mind, making it very difficult for parents to accept how the single vaccines were, in his faulty opinion, safe.

Mr. Wakefield’s current logic has it that it is the government’s fault for not allowing the importation of single vaccines. Ignore the unfounded fear that Mr. Wakefield created about measles vaccines, he asks. Blame the government. Sure the government can take some blame (anyone recall when the prime minister refused to answer whether his family used the MMR?). As does the press. But without Andrew Wakefield and his faulty assertions, there would have been no scare.

Mr. Wakefield repeats his claim that his opinions on the MMR were based on a 200 page report on measles vaccines. He didn’t even mention his 200 page report at the time of the Lancet paper and press release. Ignore the research he did (we should have. It was faulty and unethically performed). Instead, let’s look to his report. A report which only now he will release to the public, according to his YouTube video. Yes, no one has seen his report. We were all supposed to take his opinion for the past decade and a half. He didn’t even tell us about his report. We were just supposed to have such confidence in him that we were supposed to have assumed he had some reason.

Now he will finally release his report, he says. That is, if his attorneys give him permission. Yes, he will spend the money to have attorneys read his 200 pages and only then, possibly, make some edits and then let us see how he came to this faulty conclusion.

Keep in mind, in 1998 Andrew Wakefield’s statements were made in the context of an active researcher who claimed he had evidence to support a reason to instill fear about the MMR vaccine (and, let’s face it, fear of the single vaccine. One of the lancet 12 got the single vaccine.) What did he say at the time?

In a video released with the press conference, he is shown stating:

I think if you asked members of the team that have investigated this they would give you different answers. And I have to say that there is sufficient anxiety in my own mind of the safety, the long term safety of the polyvalent, that is the MMR vaccination in combination, that I think that it should be suspended in favour of the single vaccines, that is continued use of the individual measles, mumps and rubella components.

No mention of his report. He gave this in the context of a man who led the team that had just released the 1998 Lancet study.

He further asks us to accept a new revised history, and this is the statement that forced me to write again about this man. In his video he claims, “all I could do as a parent is state what would I do for my child.” He didn’t present his views as “what would I do as a parent”. He presented his mistaken views as a researcher who was actively exploring the question. Don’t take my word for it. Take his. From his testimony before the GMC:

At that stage, having done a good deal of research, I wanted to make it clear to my colleagues, including Professor Zuckerman, that since a press briefing had been recommended and was being organised, that if I were asked, if the question were put to me, then I would have to act in due conscience based upon my researches and I would not be able to continue to recommend the combined measles/mumps/rubella vaccine.

emphasis added. Not his position as a parent. As a researcher.

Many of the children in Wales who are at risk for measles infection are older than those who typically get the MMR. Their parents decided years ago, during the height of the scare, to forgo the MMR vaccine. Even if Mr. Wakefield’s ideas were correct (and multiple studies have shown they are not), these children are not at risk of developing autism by his mechanism. And yet he doesn’t call for parents to vaccinate their children. Instead, he spends his time telling us all about how it isn’t his fault that children are getting infected.

It’s not about the children or their safety. It’s about him.

The idea that Mr. Wakefield’s claims could cause a scare and lead to outbreaks of measles is not new. His own research colleagues warned him of the possibility before their press conference. They asked that they show a public face that was “agnostic” towards the safety of the MMR. Mr. Wakefield refused. And now he asks us to ignore that it was his own actions that have put children at risk.

Mr. Wakefield’s colleague and co-author on the Lancet paper, Dr. Simon Murch, made this statement long ago:

This link is unproven and measles is a killing infection. If this precipitates a scare and immunisation rates go down, as sure as night follows day, measles will return and children will die

Night has followed day. Measles has returned. And we now wait and pray that none die.

By Matt Carey

Autism reported at 1 in 50, but some parents no longer report their child is autistic. Can we say why?

16 Apr

A recent study reported that 1 in 50 children in the U.S. are autistic. This is based on parent report via a telephone survey, the National Survey of Children’s Health. The recent survey was taken in 2011-12. The last time a NSCH was performed was in 2007, and when those results were released in 2009 as Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007, a great deal of attention was focused primarily on two outcomes. First, the estimated parent-reported prevalence of ASD was about 1.1%. Second, about 0.5% of parents reported that they had been told that their child was autistic at some time in the past, but that their child was no longer autistic.

The report that came out recently presented a new parent-reported prevalence estimate: 1 in 50. (Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012). That report did not go into details about those who were no longer reported as autistic by their parents. The question was asked–as were many follow up questions.

The question and some of the responses are:

Does [the child] currently have autism or autism spectrum disorder?

No: 0.36%
yes: 1.70%
Don’t know: 0.08%

So, out of a total of a raw (uncorrected) 2.1% of parents who responded that they were told at some point that their child was autistic at some point, 0.36% said their child was no longer autistic. That’s comparable to the previous report in absolute terms (about 0.4%).

As already noted, they asked follow up questions to those who answered “no”. They asked directly “To the best of your knowledge, did [your child] ever have autism or autism spectrum disorder?”.

Of those 0.36% whose child had “lost” their diagnosis at some point, 0.24% of parents reported “No”. I.e. the parents reported that they were told that their child was autistic in the past, but out of those parents 2/3 reported that their child was never autistic. A further 0.02% said they “don’t know” if their child was ever autistic.

to put another way, in the majority of cases where a parent-reported “ever had” been told their child was autistic, the same parent reported that the child was never autistic or they didn’t know.

If you are looking for evidence of recovery, 0.07% parents said that “Treatment helped the condition go away”. Another way to look at this: that’s 69 reports out of “treatment helped the condition go away” out of 2041 who reported they had ever been told their child was autistic (ASD). That’s about 3.4% of the total “ever had ASD” population.

The survey did not ask what specific therapies parents thought helped their children go from autistic to non-autistic. They did ask if, “The condition seemed to go away on its own.” (37 parents answered yes, about 1/2 of the number who said treatment helped). 81 parents reported “The behaviors or symptoms changed” 46 reported “A doctor or health care provider changed the diagnosis.”

Out of the total 0.36% (343) reports of no to “Does [the child] currently have autism or autism spectrum disorder?”, 102 said that “The diagnosis was given so that [the child] could receive needed services” and 122 said “You disagree with the doctor or other health provider about his or her opinion that [the child] had autism or autism spectrum disorder.”

The National Survey of Children’s Health is not just about autism. Which means they can’t spend all their time on autism questions. This time they have answered some of the questions raised by the idea that a sizable fraction of parents who are ever told their child is autistic later conclude their child is not. That fraction where parents report that treament was part of what “made the condition go away” is nonzero, but at about 3.4%, it is small enough that getting accurate information on what the parents thought was involved will be difficult. And it should be about 3-4 years before we get another NSCH survey report.

By Matt Carey

California Department of Education sued

11 Apr

A group of parents in Morgan Hill, California (a city south of San Jose) have sued the California Department of Education for failing to insure that special education students within the Morgan Hill Unified School District are given a Free, Approrpriate Public Education (FAPE). The group, Morgan Hill Concerned Parents Association, filed suit Dec. 29, 2011. Just last month, the judge denied the CDE’s request to dismiss the case.

The California Concerned Parent Association has a discussion of the case. They also have a FaceBook presence.

Plaintiffs seek to force the CDE to actively fulfill its statutory obligations to ensure the provision of FAPE, rather than passively record the districts’ failures. Among other shortcomings, the Complaint alleges that California school districts are failing to: identify children with disabilities at an early age; properly assess and categorize the children’s disabilities; develop and implement individualized education programs and educate them “to the maximum extent appropriate” in the “least restrictive environment,” that is, in a general education environment with their non-disabled peers.

The organization is alleging that the CDE takes a passive or reactive role than is required by law. The parents are alleging that their district is failing to provide FAPE and that the CDE failed to properly review the district and to enforce laws even in those cases where reviews found the district to be out of compliance.

The CDE asked that the case be dismissed and on March 29th, this motion was denied.

More discussion can be found at the California Concern Parents Association facebook page, their website, and this story: Parents of disabled children sue California DOE.

By Matt Carey