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Kirby, wrong on the radio

14 Aug

First there was the world tour (well, to London). Then there was the national tour (well, around a day’s drive from NYC, or thereabouts). Now, we had David Kirby, live by phone on the radio!

The talk is broken into two hours. Mr. Kirby starts at about 50 minutes into the first hour. And, he doesn’t waste time. He instantly moves into getting it wrong.

First he says that anyone who thinks that the science is on the side of saying there is no link isn’t keeping up with the science. This is because (un-supported assertion coming up) “new stuff comes up virtually daily” coming in from major universities around the world.

Well, yes, new stuff is coming in daily from major universities around the world. There’s all sorts of stuff coming in on a multitude of areas, so, I guess he’s right. But, there isn’t stuff coming in daily to support the vaccine/autism concept. Take the last 5 years. With stuff coming in virtually daily, there should be over 1,000 “stuffs” (nice that he didn’t say “research” or “papers” or “results”, but “stuff”). Did anyone else listen to the Autism Omnibus? Did you notice over 1,000 stuffs being presented, or did you, like me, hear a few studies that may or may not support the idea?

OK, that isn’t a biggie. He moves on quickly into…come on we all can all guess….that’s right! Mitochondria! And, right off the bat, he gets it wrong.

He brings up that just yesterday from the UMDF (good group from what I can see) about the research from the Newcastle and Virginia Polytechnic Institute that Kev and Kristina noted recently.

Mr. Kirby mentions that the study noted that 1 in 200 have a “DNA mutation that may confer mitochondrial dysfunction” and “..this is exactly what Hannah Poling had when she got 9 vaccines in one day.”

OK. Now the facts. The study indicates a number of specific, measurable mtDNA mutations that might lead to mitochondrial disorders. Only one mtDNA mutation has yet been found with Hannah Poling–and this is not one of those studied in the recent paper. A major piece of David Kirby’s arguments so far has been that the mtDNA mutation that Hannah Poling and her mother have is benign. The dysfunction results, according to David Kirby’s interpretation of his source, is in Hannah Poling’s nuclear DNA.

As an aside, Mr. Kirby’s stance has been that the Hannah Poling type of dysfunction is inherited from the father (an apparent misinterpretation of it’s own). I bring this up to point out even more–David Kirby knows that there are major differences between the recent study and the kids in the upcoming 30-kid study that describes children with conditions similar to Hannah Poling (with the exception of any vaccine trigger, but that gets glossed over by Mr. Kirby too).

It is worth reading this comment yesterday from Prometheus.

One thing he notes is that a number of the people identified in this study had mtDNA mutations linked to Leber Hereditary Optic Neuropathy (LHON). You don’t have to go farther than the name to realize that an “optic neuropathy” isn’t “exactly what Hannah Poling had…”

Do I dare listen to hour two?

Misplaced anger, or, I'd be pretty annoyed with the PSC if I were a petitioner

3 Aug

Sharyl Attkisson has recently “discovered” what those of us who have been watching the Autism Omnibus closely have known for months: Hannah Poling is not the first person with autism or autistic symptoms who has had been compensated* in vaccine court (as evidenced by Neurodiversity.com and Arthur Allen)

(*note that Ms. Poling’s case is still on going and she hasn’t been “compensated” yet.)

That said, one of the comments on Ms. Attkisson’s blog struck me. I’ll pick a bit out here, from Tim Kasemodel:

Our Government has been good at sweeping things under the rug – but the rug is no longer big enough, and great reporters such as Sharyl Attkisson are beginning to look there.

Ah, let’s see. I’ll point out, though I can’t prove, that I found other cases in the vaccine court’s history involving autism/autistic symptoms within days of David Kirby breaking the Hannah Poling story. It wasn’t hard–the government has cleverly swept these cases “under the rug” by putting them on their server in plain sight. The Chief Special Master made statements in the press about previous cases. (I need to find a good link for that, I know). My guess is that Ms. Seidel found more by doing those clever searches that got her subpoenaed (since a “mere housewife” wouldn’t be able to do computer searches, or some such nonsense).

So, we’ve established (I hope) that these were not hidden or “swept under the rug.” Given that, would you like to guess my reaction on finding this? Anger. Annoyance. Disappointment.

Yep. I was pretty pissed off. At whom? The petitioner’s steering committee (PSC).

I bet that raises some eyebrows and has a few people thinking I’m making stuff up, but it’s the cold hard truth. It bothered me. Did no one in the vast number of lawyers preparing the petitioner’s case ever do a search through the vaccine court’s cases for the keywords “autism” or “autistic”?

It’s no surprise that I think the PSC doesn’t have a case. But, I think that since the Omnibus wasn’t dismissed, the petitioner’s deserve their day in court with good representation. Missing such a simple thing as the existance of related cases doesn’t make me feel like the PSC is as good as it could be.

Hence the title–I think he anger is misplaced. The government didn’t sweep this under the rug. The PSC (petitioner’s steering committee), the autism/vaccine “advocates”, journalists (or not? I’m still trying to work that one out) like David Kirby just dropped the ball.

The fact that Sharyl Attkisson can pass this off as “news” when Arthur Allen and Neurodiversity.com have covered the idea just goes to show that the people promoting the autism/vaccine link keep dropping the ball.

As AutismNewsBeat recently noted, CBS news has discovered that people get paid for work. Actually, they seem to be demonstrating that people get paid for other people’s work. Seriously, are Arthur Allen and Kathleen Seidel getting royalty checks on this story?

Sullivan
Nikolai Ivanovich Lobachevsky Endowed Chair
LBRB School of Journalism

Facist Britian?

14 Jul

Watch Channel 4 news tonight at 7pm (for non UK-ers you may be able to watch here. There is apparently a horrific (if true) autism related story on tonight.

According to an email circulating:

…a special report regarding a disabled child taken into care through the back door by Bedfordshire, following the parents successful appeal to SENDIST and a High Court decision, which is irrational but dangerous. It is important piece especially for parents whose children are in boarding schools as it is enabling LEAs to place children in local provision and care, if the cost is cheaper than the child’s current provision.

Basically, what this report is claiming is that a couple tried to get their child into a particular school. The LEA protested their choice (far from uncommon). SENDIST supported the parents decision which meant the child would go to the school of the parents choosing. At this point, the LEA had the child taken into care. This would mean they would have control of where the child was schooled.

If this is true this is beyond appalling. The only reason I can possibly think of for the LEA to initiate such a despicable action is to save money. It sounds like the parents wanted a school that the LEA felt was too pricey. Thing is, for LEA’s (and I speak from experience) ‘too pricey’ is comparable to a bag of chips.

Worryingly, IPSEA (Independent Panel for Special Education Advice) seem to have experience of this very thing:

We have received some reports of parents being threatened with the removal of their child (or actual removal taking place) because the approach those parents have taken towards their child’s education is alleged by their LA to constitute “child abuse”. An example of such “abuse” has been a parental request for special school placement rather than mainstream placement.

Amazing. I can’t imagine anything more terrifying then some jumped up suit wearing bureaucrat telling you to agree with them or they’ll remove your child. How do the people who do this sleep at night?

UPDATE. Below is the Channel 4 report.

http://services.brightcove.com/services/viewer/federated_f8/1184614595

Is the Prevalence of Low Functioning Autism Among the Amish Actually Lower Than Expected?

2 Jun

Note: For purposes of this post, the term ‘low functioning autism’ will refer to autism that co-occurs with mental retardation, or an IQ evaluated at less than 70. The validity of this accepted nomenclature is not the topic of this post.

–

Summary

The prevalence of low functioning autism among 2-9 year-old Amish children in Lancaster County, Pennsylvania, has a lower bound of 14.2 in 10,000. This is in line with the prevalence of reported autism with mental retardation in the California DDS system (at most 13.1 in 10,000) for the same age cohort. Additionally, it is not too far away from the prevalence of low functioning autism as ascertained by more methodologically rigorous epidemiological studies.

While no assertion can be made about the prevalence of high functioning autism among the Amish, the existence of an “Amish anomaly” is unsupported and appears increasingly unlikely.

Background

Dan Olmsted had written a well-known series of articles where he claimed (1) that Amish children are never vaccinated [source] or that only a small percentage are [source], and (2) that the Amish either don’t have autism or that autism is exceedingly rare among the Amish.

These claims were subsequently scrutinized by Prometheus, Autism News Beat and Lisa Jo Rudy. They investigated the matter and found that both claims are most likely mistaken. Autistic children do exist among the Amish, and the Amish do indeed vaccinate. The Amish of Illinois appear to vaccinate at a rate of 90%. Lisa Jo Rudy’s source provided a figure of 70% for the Amish in Lancaster County.

Apologetic responses by Dan Olmsted and Mark Blaxill (PartI and Part II) followed. The gist of the responses is that Dan Olmsted was not actually negligent in his reporting. Olmsted claims he did attempt to contact The Clinic For Special Children without much success. Additionally, Olmsted and Blaxill claim that while the Amish do vaccinate, they do so at a lower rate than that of surrounding communities, and therefore, they argue, the finding of an “Amish anomaly” is still relevant to the hypothesis that vaccination is an autism risk factor. (The responses also appear to indicate that those who scrutinize Olmsted’s reporting are “wackos” and say “some stupid things” — I’m guessing this was done to discourage further criticism).

Notwithstanding these responses, it is clear that the credibility of Olmsted’s reporting suffered a substantial blow. Take, for example, one of his most popular findings: That the few autistic children he came across happened to be ones who were vaccinated. This finding is rendered completely inconsequential by the mere fact that most Amish children are vaccinated at least once.

What I really want to address in this post, nevertheless, is the persistent claim that autism is exceedingly rare among the Amish, with a focus on low functioning autism.

Why low functioning?

Dan Olmsted was not likely looking for high functioning children, and even if he was, it is improbable he had the means to properly ascertain the prevalence of high functioning autism. The expertise required for such an endeavor is non-trivial. A methodology that consists of “asking around” is not likely to produce an accurate result.

Furthermore, Dr. Strauss of The Clinic For Special Children had told Autism News Beat that they do not screen for ASDs, nor do they see high functioning autistic children at their clinic.

Strauss says he doesn’t see “idiopathic autism” at the clinic – children with average or above average IQs who display autistic behavior. “My personal experience is we don’t see a lot of Amish children with idiopathic autism. It doesn’t mean they don’t exist, only that we aren’t seeing them at the clinic.”

Strauss says a child in the general population is more likely to have autism detected early and to receive a diagnosis than an Amish child. “An Amish child may not be referred to an MD or psychologist because the child is managed in the community, where they have special teachers,” he says. “We know autism when we see it, but we don’t go actively into the Amish community and screen for ASD.”

[source]

With all due respect to Dr. Strauss, I think a clarification is in order before we proceed. I believe he mixed up terminology in his statement to ANB. Idiopathic autism simply means that no cause has been determined for a particular child’s autism. There may or may not be mental retardation in idiopathic autism. The same is true of non-idiopathic autism.

It seems plausible that The Clinic For Special Children generally only sees autistic children who are low functioning. The important thing is that this is the case of the children in a study we will discuss shortly.

Another important clarification is that when I talk about low functioning autism I am not referring to Autistic Disorder vs. “full syndrome autism” vs. PDD-NOS vs. Asperger’s Syndrome. This appears to be a common point of confusion. There may or may not be mental retardation in Autistic Disorder. It is not a requirement in the diagnosis.

Minimum Prevalence Calculation

I am not going to count autistic children Dan Olmsted claims to have found. This is because it is unclear how many exactly he found where, given his reporting methodology, nor is it clear what the characteristics of the children are. Furthermore, I personally don’t consider his reporting reliable.

Thankfully, there is a peer-reviewed study we can use: Strauss et al. (2006). This is a study of Old Order Amish children from Lancaster County. In Table 1 of the paper we see they look at 9 patients, ages 2 to 9, 100% of whom have mental retardation, and 67% of whom have pervasive developmental delay or autism. In other words, this study identifies 6 low functioning autistic children. Let’s consider this the minimum number of autistic children, ages 2 to 9, among the Amish of Lancaster County. At this point we just don’t know if The Clinic For Special Children has come across other low functioning autistic children.

Also of note is that the children “had no distinguishing physical features, and growth trajectories were normal, although all patients had relatively large heads and diminished or absent deep-tendon reflexes.” This tells me that there was nothing noticeably odd about these autistic children that would lead someone to believe they are different to non-Amish autistic children. The fact that a genetic etiology was determined in these cases by top geneticists is of no consequence to a prevalence calculation in my view.

The Amish population of Lancaster County is about 25,200 (Raber’s 2004 Almanac via this web page). Their life expectancy is similar to that of the US general population. However, they have high population growth, with their population doubling every 20 years. This is similar to population doubling in India, which I will use as a reference to calculate the number of 2 to 9 year olds among the Pennsylvania Amish. According to the CIA World Factbook, 31.5% of the Indian population is 0 to 14 years of age. Extrapolating from this, I will estimate that 16.8% of the Lancaster County Amish are 2 to 9. In other words, there are 4,234 such children.

Since we know there are at least 6 low functioning autistic children in this community, the absolute minimum prevalence of low functioning autism for the cohort is 14.17 in 10,000.

California Comparison

No methodologically sound exhaustive autism screening has been carried out in the Amish population. We only know about cases that have been reported. This is why I thought a comparison with California reporting would be fair. It may not be precise, since the ascertainment methodologies are not the same, but I don’t believe it can be called an unfair comparison. Further, I do not believe the well known limitations of California DDS data make the comparison unfair either.

As of December 2007, there are a total of 17,029 children 2 to 9 in California classified as autistic and who have sought DDS services [source]. Most of them do not have mental retardation. We don’t know exactly how many have mental retardation, but we can determine a ceiling on that. For this, I counted how many autistics total have mental retardation, plus – to be fair – how many have “unknown” mental retardation status. This came to 32.67% of all autistics in the system. Since this proportion is known to have dropped considerably as more young children have been diagnosed in recent times, it follows that 32.67% is an upper bound percentage when it comes to children. In other words, there should be at most 5,564 known low functioning autistic 2-9 year olds in the California system.

Since the 2-9 population of California is 4,248,774 (2006), the prevalence of reported low functioning autism for the cohort is at most 13.1 in 10,000.
Comparison to Epidemiology

I often discuss how the prevalence of already recognized autism, and the prevalence of screened autism (or true prevalence) are two very different things. In particular, when autism is thoroughly screened in populations with intellectual disabilities, a lot of autism which wasn’t previously thought to be there is suddenly found (e.g. Shah et al. 1982; La Malfa et al. 2004; Matson et al. 2007).

Epidemiological studies are not necessarily perfect in this regard, but their methodology goes considerably beyond any work currently available as far as the Amish population is concerned. Let’s take Yeargin-Allsopp et al. (2003), for example.

Cases were identified through screening and abstracting records at multiple medical and educational sources, with case status determined by expert review.

The prevalence of low functioning autism from this Atlanta study was 23.12 in 10,000.

There are two UK studies by Chakrabarti & Fombonne (2001; 2005) ascertaining the 4-6 prevalence of PDD. The derived prevalences of PDD with mental retardation from these studies are 16.15 and 17.5 in 10,000, respectively.

Finally, we have a Chinese study, Zhang & Ji (2001), with a finding of 11 in 10,000 autistic children, all of whom were “intellectually disabled.”

Dr. Johnson testifies in the Autism Omnibus Hearing

24 May

Dr. Johnson’s testimony was fabulous and I think it’s safe to say that it wreaks more devastation on the petitioners'(the parents) case. As of this moment, I can’t give you a lot of detail about Dr. Johnson’s qualifications, unfortunately. For some reason a portion of the audio recording (MP3) that would have included Dr. Johnson’s statement of his qualifications is missing.

One thing I think is important to point out here is that the respondents experts’ (written) reports, and even the list of the respondents’ experts has not been posted to the Autism Omnibus docket. The parents’ lawyers (the Petitioners Steering Committee, or PSC) do have their experts list posted to the docket. Some time ago (I think it was more than a year ago) the Department of Justice attorneys asked the Special Master if the Federal Court would refrain from posting the lists of the respondent’s experts for fear that their experts would be subjected to harassment. That request doesn’t seem to be on the docket now, but it used to be. It’s likely that after the experts were listed the first time the experts for the government were harassed. This would be in keeping with the way different experts, and even parents such as myself and Kevin Leitch and others, have been harassed by “mercury parents” or their friends. You can see from the Autism Omnibus Proceedings Docket Here: http://www.uscfc.uscourts.gov/node/2718 that the there are no more postings of lists of respondents’ experts after mid 2006. There’s an entry from March of 2007 that is called, “Respondent’s Notice of Expert Witnesses,” but there’s no document now linked to that entry.

The point I’m trying to make about the missing expert list is: I can’t pull up the list of expert witnesses for the respondents (the US government, essentially) for this hearing because it’s not available. So I can’t find out easily who Dr. Johnson is, though he is a professor at university, and has a lab, and has published on neurophyisology and neurodegenerative diseases, and he uses tissue slides and tissue cultures. Worse, “Johnson” is a very common name so if you go looking for experts named Johnson who publish in neurodegenerative diseases, you’ll find 3 or 4 of them in pubmed. The DoJ lawyer here is one of Mr. Matanoski’s team of attorneys. As far as I can tell the junior attorneys on the team are Bo (Beau?) Johnson, Ms. Ricciardella, Ms. Renzi and Ms. Espinoza (Espinosa?).

I don’t know which lawyer is examining Dr. Johnson. From her voice, I’m guessing (again) that it’s Ms. Renzi. Again this is my transcribing of what was said, some of it is word for word, some of it is a close paraphrase of what was said you can find the following somewhere around 8 minutes 43 seconds on the second MP3 file from Day 7 (May 20). Here is some of the very interesting testimony from Dr. Johnson:

Ms. Renzi: Dr. Deth cited a paper by Mady Hornig in support of his arguments. You mentioned that the mouse strain Dr. Hornig used was selected because it had a stronger immune response, but took issue with Dr. Deth’s explanation of the rationale behind the use of the strain. … Deth said hers was a mouse strain harboring genetic deficits in redox related enzymes… What strain of mouse was used?

Dr. Johnson: It was an SJL-J mouse. (Dr. Deth) was inferring that there was a redox enzyme differential, or some kind of differential (in this strain) and that’s absolutely not true. The mice have a this increased immune response and that’s why they were selected. … There’s absolutely no data supporting the fact that there is a redox enzyme differential. Now I can understand the reason that it’s in there because it supports his hypothesis… but it’s not an accurate representation of these mice.

Renzi: Do you have confidence in Dr. Hornig’s reported results?

Johnson: Uh, no.

Renzi: Part of that has to do with the hippocampal sections, correct?

Johnson: The quality of the images,… I’ll point this out, (the sections from the Hornig paper) .. What you can see is when you look at these images–to me these images are absolutely awful, now the staining here is hematoxylin and eosin, and it’s supposed to stain for architecture and cell integrity and a variety of other things. The pictures are diffuse, there’s no clear neuronal fields. Right here there is weak staining. … If you look here, the cells that are dark right there, those are the neuronal fields. The quality is just extremely low. … Quality of the sections themselves are low. … Let’s put it this way, I’ve seen this in my lab before. I’ve seen people come to me with sections stained like this. I’ll say: Something’s wrong. OK? The tissue wasn’t prepared right. There’s something definately wrong here. Because these do not maintain the nice cellular architecture that you should see if the experiment is done right and the tissue is harvested correctly.

Renzi: Problems with these slides led you to doubt the findings of the Hornig paper? Has a recent paper contradicted Hornig’s findings? …

Johnson: The… comparable fields in the Berman paper. To me they are absolutely beautiful. … It looks very, very, very good.

Renzi: … What dose of thimerosal was used in the Berman paper?

Johnson: …They also used a does that was 10 times higher…

Renzi: Did both studies (stain with antibodies)?

Johnson: There is a distinct difference between Berman and Hornig studies’ slides… If you look at the architecture of the tissue in the Berman study…. (there is) nice staining in the hippocampus….

Special Master:… (interrupt for clarification)

Johnson: … Berman sections are the two sections on the left side… What you can see is there’s very nice staining in the field, the neuronal field are not staining intensely (which is what they are expected to show)

Now if you look at the upper 4 panels on the right side these are from the similar panels from the Hornig study. The first thing that I want to point out is that if you look at the tissue, it’s full of holes… Look at this enhanced image right here, the bottom two panels C and D from the Hornig. You can see that the tissue almost looks like it’s disintegrating, It’s breaking down. There’s holes all over in the tissue.

I know from experience when you see tissue like this the amount of nonspecific staining by antibodies could be intense.

Basically, if someone came to me with this kind of staining in my laboratory I would say to go back and do the whole experiment again,… I would not want… for one these are unpublishable to me, and two the potential for artifactual data to be generated from this kind of (poor quality tissue) is extremely high. … This is very important. You know, you can do whatever you want after you’ve got the tissue, but it’s the process of getting the tissue so that the quality is extremely good. You need to start with high quality tissue.

… The Berman tissue was absolutely perfect. … The sections are beautiful.

One thing I took away from Dr. Johnson’s testimony is that there’s no way that the Hornig paper should

have made it past a competent peer review and into a “peer reviewed” publication. The Hornig paper has a few other problems that have been discussed before, but these problems never been reported in into a letter to the journal that published that paper, Molecular Psychology, as they should have. (Click here to download a copy of that paper from the SAFE MINDS website.)

Hornig wrote that paper with her main squeeze, Ian Lipkin, and with David Chian. This research was funded by the UC Davis MIND Institute, SAFE MINDS and by part of an NIH grant of Ian Lipkin’s. Surely someone knew how bad those tissue slides were even before it was submitted to the journal. Surely someone at the journal should have had a person with some kind of expertise review the article. Surely in 2004 some person with expertise would have noticed the problems with the degraded and uninterpretable tissue slides in the Hornig paper. I didn’t notice any problems with the slides when I read the paper because I don’t know what stained tissue of mouse hippocampus is supposed to look like and neither would most of the mercury parents who have tried to use this paper to show that their own child was made autistic by vaccines containing thimerosal.

The MIND Institute scientists must have seen the problems with Mady Hornig’s study, but they invited her to come speak about her thimerosal-causes-susceptible-mice-to-become-mindlessly-violent-killers hypothesis at the conference I call the “MIND’s mini-DAN!”. Video of her speaking at that conference is still available on the MIND’s website here: http://www.ucdmc.ucdavis.edu/mindinstitute/events/toxicology_recorded_events.html

And you can see video of John Green speaking there, too. He was described in the most glowing terms by Dr. Robert Hendren. Maybe Dr. Hendren didn’t know about the “earthworm eggs” and “fecal implantation enemas” that Dr. Green had prescribed to some of his patients. After Green spoke, Dr. Hendren knew about the problems with Green’s citing of a provoked urine toxic heavy metals lab result from Doctor’s Data Inc that was in Dr. Green’s slides, because I told Dr. Hendren about the problem with that lab report. As far as I could tell, Dr. Hendren wasn’t particularly worried about that. The video of Dr. Green “explaining” what that lab test meant to him is still on the MIND’s website. I have a problem with that, since parents can watch those videos and make poor treatment decisions for their children based on them. On the other hand, those videos seem to stand as a testimony to something less than scientific that seems to be going on at the MIND Institute. To UC Davis’ credit however, the Berman (2008) study that totally contradicts the Hornig (2004) study was also conducted at UCD.

Dr. Johnson has plenty of interesting things to say about Dr. Richard Deth and his neuroblastoma cell line experiments. Apparently, Dr. Deth will be back to testify again in the autism omnibus. Perhaps he will explain why he seemed to cut his experiments short (time-wise) and why he called neuroblastoma cells “neronal cells” when they should not be called neuronal cells, and why he didn’t show critically important “dose response curves”.credit: taminsea

I may have to devote a separate post to the issue of Deth taking data from (but not citing) a 1958 paper (pdf) that reported the level of cystathionine in duck brains (besides duck, also, human, cat, rat, guinea pig, horseshoe crab, chicken, cow and monkey).

Dore pwned in medical journal: expensive and unproven ‘cure’

29 Sep

The Dore programme is an interesting ‘cure’ for all kinds of things: as Dorothy Bishop puts it, “Dore Achievement Centres are springing up world-wide with a mission to cure cerebellar developmental delay, thought to be the cause of dyslexia, attention-deficit hyperactivity disorder, dyspraxia and Asperger’s syndrome. Remarkable success is claimed for an exercise-based treatment that is designed to accelerate cerebellar development.” Sound great, doesn’t it. Except, as Bishop shows in a new journal article, this is not supported by good evidence and it is therefore the case that “the claims made for this expensive treatment are misleading”. While academic journals are normally pretty restrained, this is about as close as I’ve seen to a thoroughgoing fisking in a journal article: Dore, and their research, are really pwned here. Given that – according to Ben Goldacre in the Guardian – a course of Dore treatment costs around £1,700 (and takes a load of time) I’d want much better evidence of efficacy before splashing out.

Dore is certainly well-promoted. Google “Asperger’s Syndrome” and it brings up an advert for Dore’s “Proven Long Term Drug-Free Solution Relieving the Symptoms of Aspergers”. Google “dyspraxia” and an advert informs one about Dore offering a “Proven Long Term Drug-Free Solution Relieving the Symptoms of Dyspraxia”. Google “dyslexia” and an advert promotes Dore as a “Proven Drug-Free, Exercise Based Dyslexia Remedy”. As a slick Dore promotional DVD puts it: “Now Dore Centres are able to offer real hope to those in despair” due to suffering from ‘learning disorders’. This includes Asperger’s Syndrome, which Dore’s UK site describes as “a problem associated with poor social behaviour.” Dore is apparently “suitable for those with high functioning Asperger’s Syndrome and Autism” (are any alternative treatments nowadays not marketed as suitable for people on the autistic spectrum?).

This marketing might make Dore seem appealing. Bishop notes that, “Although most of the promotion of the treatment is based on personal testimonials, these are backed up by research. Dore pointed to a study showing that treatment led to a nearly fivefold improvement in comprehension, a threefold improvement in reading age, and a 17-fold improvement in writing.” Sounds good, right? But the quality of the research was pretty dismal. Among other problems, while the research did include a control group

there were no data corresponding to a time when the treatment group had had intervention and the control group had not – because the control group had embarked on treatment at the end of the first phase. Accordingly, the authors presented the data only from the treated group.

‘Oops’, is all I can say…Bishop puts it more eloquently, making clear that “The publication of two papers in peer-reviewed scientific journal (Dyslexia) has been presented as giving further credibility to the treatment. However, the research community in this area has been dismayed that work of such poor standard has been published.” I wonder how the researchers justified this poor control to Dyslexia – maybe the good old excuse that ‘the dog ate my control group’?

This might sound bad for Dore, but that’s not the half of it – Bishop also takes apart Dore’s posited mechanism of action:

The gaping hole in the rationale for the Dore Programme is a lack of evidence that training on motor-coordination can have any influence on higher-level skills mediated by the cerebellum. If training eye–hand co-ordination, motor skill and balance caused generalised cerebellar development, then one should find a low rate of dyslexia and ADHD in children who are good at skateboarding, gymnastics or juggling. Yet several of the celebrity endorsements of the Dore programme come from professional sports people.

So, aside from lacking a plausible mechanism of action, and lacking good evidence of efficacy, Dore seems like a great idea. If that leaves anyone rushing to get out their cheque book, Bishop kicks the dead horse a few more times. It’s therefore also worth quoting Bishop’s key points about the Dore treatment:

1 The treatment offered by Dore Achievement Centres is being promoted as a “drug free” alternative to conventional treatment for ADHD, and as a ‘miracle cure’ for dyslexia. It is presented as having a neurological rationale and gains credibility by appearing to be medical treatment.
2 The publication of two papers in peer-reviewed scientific journal (Dyslexia) has been presented as giving further credibility to the treatment. However, the research community in this area has been dismayed that work of such poor standard has been published.
3 The research purporting to show efficacy of the treatment does not show sustained gains in literacy scores in treated vs. control children. Furthermore, the intervention has not been evaluated on the clinical groups for which it is recommended.

Ouch. If only more articles in science journals were like this – clear, well-written, and brutal in a rather entertaining way – they’d make much better weekend reading…

Downturn

7 Oct

I try and maintain a positive outlook about autism at all times. Its not hard to do as I see the evidence of lives lived as their owners want all around me. I gain hope from reading the blogs of AutismDiva, Amanda Baggs, Alyric, Larry Arnold and many others and I see their belief, based on their own life experience of autism as a way of being.

But I won’t pretend its not hard sometimes. Not to wish for a different sort of daughter, no. That idea is not part of neither my wife’s nor my beliefs. What we do wish for is that life could be easier. Autism does make it hard sometimes. Not intrinsically I hasted to add – there’s nothing we find massively difficult about our daughter. Its _reactions_ to autism that make autism hard.

For example, we’re trying to arrange delivery of a large item to our home. Modern delivery systems seem to have dispensed with the idea of customer service. Instead they say – ‘we’ll be there sometime between 9 and 5 on Tuesday’. We ask for an exact time as we’ll need time to prepare Megan for the intrusion into her home of a stranger. They can’t (or won’t) provide it. So begins a battle of compromise until we’re all happy. Except we’re not. We’re reduced to getting an hours notice and we have to put Megan in the bath and shut the door so we can take delivery of our product without her having a meltdown. Great – Megan has to compromise. Again. the company we’re _paying_ for the ‘service’ don’t. Again.

Unfortunately, something a bit more serious than this intruded into our lives yesterday. As some of you may know we have Megan is in a mainstream school. She started last year and had a great year, making leaps and bounds of progress.

Unfortunately, both of her learning assistants left at the end of last year so Megan had to start the school year with two new support assistants, a new form teacher, in a new classroom with an increased amount of pupils.

Yesterday, one of her new support assistants gave her notice in. The school are starting to make noises that they feel Megan can’t handle the new environment.

I sat there, stunned, as they outlined all this to me (my wife’s not well and couldn’t attend). Up until now, both support assistants had been saying how much Megan had achieved and how positive things were. As far as we knew, this new year was going well. Yes, Megan was reacting to the change – sometimes negatively – but thats to be expected. The amount of new things she had to cope with made that inevitable.

And things started off like this last year but we stuck with it, _Megan_ stuck with it and got so much out of the year as a whole. She made friends, she participated in the lessons, she got gold stars for good behaviour.

And now this. We feel like the support assistant who is leaving has jeapordised Megans whole future at this school. She stated as part of her reason for leaving that she couldn’t reach Megan. This left us in bits. After being with Megan for _less than 2 months_ she feels Megan is unreachable? And the worrying thing is how much credence the school are giving this. They’re not interviewing a replacement, they’re cutting her attendance down to half a day again and they’ve asked us to ‘take a look’ at the one special school in our area.

Thing is, we already _have_ taken a look at it and we didn’t like it at all.

Why does _Megan_ have to suffer because someone else can’t do their job? Why do we have to worry that our non-verbal daughter might have to go to a school where a taxi-driver takes her and picks her up? Why should we have to again accept second best for Megan when the only reason we have to is that the facilities don’t exist? You can bet that if there were a shortage of schools generally people would be falling all over themselves to address that need.

Getting Megan into her current school, fighting to get her a Statement to address her needs was long, exhausting and thankless (Amusing side note: After this battle was fought and won over a 6 month period of constant wrangling I told my Dad we’d got everything we fought for and my Dad said ‘ooh, that was lucky wasn’t it!’ Thanks Dad.) and now it looks like we’re going to have to do it all over again.

As a blogger comrade of mine frequently writes: ‘autism its not like you think.’ To which I’d add, ‘but bureaucratic jobsworths exist everywhere and act exactly as you’d think’.

Back To School For Megan

8 Sep

This is an important year for Megan’s education. Last year was very successful for her and we were very proud of the amount of effort and work she put in to progress as much as she did but still, it was in a very non-academic environment – almost like a very structured Nursery – and this year is the first year of ‘proper’ schooling with teachers expecting significant feedback and measurable targets and all that.

Obviously, there’s been lots of discussion between us and the school about how suitable these things are for Megan and there’s widespread agreement and understanding that she’ll need a lot of latitude in certain situations. She’s also not very familiar with her two new-ish support workers who she only met for about a week before the end of term in July.

Its also unfortunate that she’s going through a period of not sleeping very well. Wake up time is around 2am so she’s pretty tired by the time its time to get ready for school. As are we!

However, as with most things, our wonderfully stoic daughter has taken all this pretty much in her stride (or so it seems. Calm waters can sometimes hide strong currents so we take care to take nothing for granted). Naomi reported that she _ran_ into school on Tuesday and actually had a minor meltdown when it was time to go home. Thats not great obviously but better that than the other way around!

Yesterday, her afternoon support worker said that she was very chatty and communicable – leading her (the support worker) by the hand to the things she wanted or (occasionally) asking outright. I think its fair to say that Meggy loves school.

However, as I said at the start we have to be aware that this is something of a make or break year for Megan. The tight structure could work both ways. It could make her feel more secure and know whats expected of her, or it could add too much pressure to feel she has to conform to (to her) an alien way of thinking. If the latter does happen then we’ll need to think long and hard about where we go next. Our only really viable option in terms of state education is a special school but we’ve already been there for a look around and it wasn’t a good experience.

That leaves private education which we simply cannot afford. The prices for autism specific private education are outrageous. We may be able to get the LEA to either fund or part fund it but this is very very unusual.

Its at times like this that I do get genuinely jealous with the options parents of non special needs kids have. If they don’t like a school, they can swap to another one with very little hassle. If we feel a school isn’t right for Megan, our next choice is usually a school that we feel is even _less_ right for her.

Educational Provision Part II: Special Schools

17 Aug

Please note: the phrase ‘ASD’ stands for Autistic Spectrum Difference. ‘LEA’ stands for Local Education Authority.

Pupils with an ASD have 3 basic options when it comes to receiving an education. They can either go to a mainstream school, a dedicated autism unit or a special school.

Its my contention that there are not enough dedicated autism units in this country- its only possible to get less than half of the ASD pupil population into dedicated autism units due to a lack of places. I’ve discussed why I feel that every pupil with an ASD should have access to a dedicated autism unit placement in a seperate article – suffice it to say I believe it is wrong to deny a pupil what is potentially their best opportunity for an education and that educational choices should be about need rather than policy or finance.

I’ve also discussed why I feel that mainstream education is not always the best thing for a pupil with an ASD. In this article I’ll discuss why Special Schools are not always the best thing for a pupil with an ASD either.

What Is A Special School

A Special School is a school that caters for pupils with a disability that is so ‘severe’ that their educational needs could not be met in a mainstream environment. This covers a very wide range of disability, both physical and learning based. For a lot of pupils, Special Schools are an ideal solution to their educational need but for pupils with an ASD, this very diversity can cause problems:

Children with autism and Asperger syndrome have uneven abilities and it may not be appropriate for them to be in a setting for children with learning disabilities where it is assumed that abilities are equal across a range of subjects.

and

Boredom is a problem. There is no attempt to help interact- the unit is a communication disorders unit – the three (out of six) children with autism are often left out of activities…

NAS Inclusion Study

These two quotes illustrate both the complex nature of an ASD and the simplistic approach taken by LEA’s and the Government to address the needs that arise from such complexity. It also indicates a worrying misunderstanding of autism on a very basic level.

ASD is not the same as other learning disabilities- IQ for instance is often completely unaffected in people with an ASD- and consequently, attempting to educate users with an ASD in the same way as people with other learning difficulties isn’t really a viable solution- its more akin to an admission that an LEA doesn’t really know what to do with that particular pupil.

Pupils attending Special Schools are also sometimes required to travel long distances. In the case of my daughter, our LEA suggested to us (with a straight face!) that our 4 year old daughter could be picked up by taxi at 8am every day to be driven 20 miles to the nearest Special School. We found this suggestion to yet again display a total ignorance of ASD’s- autism is partly a communicational and social disorder. Getting into a taxi with a stranger every day would cause nothing but upset to a young child who cannot communicate feelings. I can’t imagine the parent of a non-disabled pupil accepting this as a viable option for their children so why should parents of children with an ASD accept it? The implications for potential abuse are worrying enough on their own.

A Bad Fit?

I do believe that Special Schools are a bad fit for pupils with autism. Before our daughter was placed in a mainstream school, our LEA asked us to look around a local Special School. At that point we were of the opinion that a Special School would be ideal for our daughter- one assumes that a Special School would have the right sort of staffing and training to help pupils with an ASD easily.

Its fair to say that our preconceptions were totally blown out of the water- it was obvious that this Special School had little to no idea about how to deal with autistic pupils. Pupils were encouraged to be quiet which was very worrying to us as our daughter undergoes speech therapy where she is encouraged to speak. Pupils were expected to sit still for periods of up to 20 minutes at a time- for some pupils on the spectrum (particularly young pupils) this is akin to expecting water to flow uphill! The last activity of the afternoon was an hour of watching Tom and Jerry cartoons- the whole situation seemed more like glorified baby sitting to us. Most worryingly of all, there was a little girl there who was almost exactly the same as our daughter in terms of her presentation, behaviour and ability. This little girl was spoken to by staff on one occassion for the whole afternoon we were there. We realised immediately that a Special School was not right for our daughter- we wanted her to have an education where she was valued, encouraged and actually taught. Not one where she was sidelined and marginalised.

What Next For ASD Pupils?

Due to the unique nature of autism as a disability and the fact that intervention is achievable if the right teaching is in place, I believe that for a majority (but not all) of pupils with an ASD, neither mainstream schooling, not Special Schools are appropriate educational environments. In both these environments there is evidence that pupils with ASD ‘disappear’, or are so disruptive they are excluded. The simple-to-achieve solution of providing enough pupil places in dedicated autism units would ensure that pupils with the spectrum have the opportunity to attend an educational environment that is ideally suited to meeting their need.

In my last article in this series I’ll look at what I believe a specialist ASD unit should provide to pupils and try to find out what those that exist now actually _do_ offer.

Educational Provision Part I: Inclusion

15 Aug

Please note: the phrase ‘ASD’ stands for Autistic Spectrum Difference. ‘LEA’ stands for Local Education Authority ‘SEN’ is Special Educational Need and SENCO is ‘Special Educational Needs Coordinating Officer’.

In todays news is a story that Bill Rammell MP has courageously challenged his own dept regarding a recent survey that many suspect will be used to close special schools and ‘push’ inclusion to save money.

The audit was supposed to produce a national picture of the provision available to children with special needs. In his letter, however, Mr Rammell raised fears that its remit is too narrow and ignores a range of children with special needs – including pupils with moderate learning difficulties, autism, Asperger’s syndrome, speech and language problems, complex learning difficulties, severe dyslexia and severe epilepsy.

It may come as news to some that this is nothing new. Over a year ago I wrote a series of essay’s detailing the UK Gvmts strategy for saving money at the expense of special needs pupils – particularly those on the spectrum. Over the next few days I’ll be reproducing (and slightly revamping) these essays here.

How Many ASD Pupil Places Are There In The UK?

Its impossible to give a one hundred percent accurate figure but using “Schools, Units & Classes For Children with autism and Asperger syndrome” (© The National Autistic Society, 2001), a book from the National Autistic Society that lists pupil places for children with an ASD, it seems there are about 5,229 specialist ASD-specific available places for kids with an ASD in England.

Is This Enough?

As of Jan 2003, there were 8.4 million pupils in the English school system. Of that figure, 251,000 (3% of the total pupil population) had a Statement and were therefore classed as having a Special Educational Need. Of this total, 40% were in specials schools or charity/private based schooling. This leaves us with a total of 150,600 pupils in English mainstream schools with a special need.

A recent NAS study of autism in mainstream schools reveals teachers report that 78 per 1000 pupils with a Statement have a diagnosed ASD. Therefore we can estimate that there are around 11,747 pupils in the mainstream education in England with an ASD. If we then compare that to the amount of ASD places (see above) in England we can see the extent of the problem. Roughly 55.49% of kids who have an ASD don’t have access to a maintained education specifically geared to their needs, they are left with no options and no choice.

So what happens to this 55% with no recourse to ASD specific educations? They have a ‘choice’ of being placed in a special school or going down the inclusion route which is the Gvmts preferred option.

Whats The Problem With Inclusion?

Difficulties in learning often arise from an unsuitable environment — inappropriate grouping of pupils, inflexible teaching styles, or inaccessible curriculum materials — as much as from individual children’s physical, sensory or cognitive impairments.

The above quote is taken from Chapter Two of “Removing Barriers to Education”, the Governments Strategy for SEN. Its a quote that really stands out as the Government strategy of inclusion up to this point has been to ignore the fact that a lot of pupils with an ASD are often forced into an ‘unsuitable environment’- as noted above over 50% of pupils with a diagnosed ASD and accompanying Statement of Need are effectively barred from what may well be the most suitable environment for their educational need. This fact seems something of an incompatibility when compared with the quote above.

So surely then, if over half of all pupils with a diagnosed ASD are barred from what might be their most suitable educational placement, swift and sure steps are being taken to cater for these pupils in other ways?

The answer to that question depends on who you talk to. If you listen to Government advisers then a wonderful ethos of ‘Excellence for all children‘ is being extolled across the educational landscape. Here are the key points laid out by the Government to be completed by 2002:

By 2002…[O]ur plans for raising standards, particularly in the early years, will be beginning to reduce the number of children who need long-term special educational provision; There will be stronger and more consistent arrangements in place across the country for the early identification of SEN. Schools and parents will have higher expectations of the standards children with SEN can attain. Target setting, in both mainstream and special schools, will take explicit account of the scope for improving the achievements of children with SEN. New Entry Level awards will be available for pupils for whom existing examinations at 16 are not appropriate. There will be more effective and widespread use of Information and Communications Technology to support the education of children with SEN, in both mainstream and special schools.

Unfortunately, the Government seems to have missed most of these targets badly. The Audit Commission examined the above details in the target year of 2002.

In spite of a plethora of local initiatives, our research suggests that early intervention has yet to become the norm – in terms of age or level of need.

Audit Commission.

Many teachers feel under considerable pressure, on the one hand to meet the needs of individual pupils, and on the other to deliver a demanding national curriculum and achieve ever-better test results; research suggests that many feel ill-equipped for this task. We interviewed over 40 SENCOs, many of whom felt their colleagues lacked confidence in working with children with SEN. SENCOs’ concerns were echoed by many of the parents we met, who were often disappointed at the level of SEN-related expertise in school….several commented more generally on some teachers’ lack of understanding, particularly in relation to children with behavioral difficulties. Their perceptions are consistent with academic research which indicates that staff skills and confidence in relation to SEN vary widely.

Audit Commission.

I share the Audit Commissions grave concerns (the conclusion to the above quoted document is sub-titled ‘time for a rethink?’). It seems we have a situation where children with an ASD are not only actively excluded from what might be the best education for them but there is also a severe lack of appropriate education in the mainstream environment.

Are ASD Pupils ‘Special’

I think in an educational sense that they are. Teachers these days are being asked to carry an increasingly heavy and more diverse workload and the nature of pupils with ASD could easily mean that they ‘slip between the cracks’. This would happen due to a combination of the nature of ASD and the increasing workload of the teaching staff.

Children with an ASD tend to fall into two very broad behavioral groupings (and I’m not keen on these labels but in an educational sense they fit)- ‘high functioning’ pupils who can cause behavioral problems if mishandled or’low functioning’ pupils who are very quiet and withdrawn. As we have already seen, teaching staff are already perceived by both their peers, specialists in SEN’s and parents to lack awareness of the issues at hand or the knowledge in how to deal with these issues properly. This very commonly results in either the exclusion of the pupil or the pupil ‘disappearing’. Neither outcome is desirable.

Statementing- a Partial Solution?

When we decided that our daughter should go to a mainstream school (not that we had much option) we only did it as part of a rigorous Statementing process. The law states that a Statement must be followed to the letter by the school that the pupil concerned attends. Without this Statement, parents perception is that there is nothing to stop LEA’s from doing the absolute bare minimum for their child. There are whole websites on the Internet dedicated to walking parents through the statementing process with a depressing amount of confirmation of the contention that without Statements LEA do indeed do the bare minimum for a child with ASD, either through ignorance or a desire to cut costs.

The only trouble with Statements is that this Government wants to reduce them. In a 2003 research document a study was performed on how to reduce statements and what the effects of reducing statements were. The gist of the research document was that LEA’s had reduced Statements by 8% in the last 5 years and that they had done this by issuing fewer statements rather than discontinuing existing ones. Over two thirds of the canvassed LEA’s said that they now maintain more statements for pupils with an ASD. One quote from the document reads:

Pupils with ASD were the group most often highlighted in interviews with LEA and school staff in four authorities visited during fieldwork. Some suggested that the increase in statements for this group was linked to higher levels of anxiety among their parents, associated with a perceived lack of awareness about ASD in schools…

When all else fails, blame the parents. Here we all are, neurotically insisting that our simply badly behaved children are issued Statements at the drop of a hat whilst the poor hard-pressed LEA’s are simply feel ever so sorry for us all and try and help by giving us a placebo Statement. Unfortunately for the LEA’s interviewed rather the reverse seems to be true; there is no ‘perceived lack of awareness about ASD in schools’, rather there is an _actual_ lack of awareness about not just ASD but SEN in general, as documented and stated by the Audit Commission (see above quotes).

I would suggest that those people who believe that Statementing is an ‘easy ride’ should go through the process before judging. Getting a statement is such a long drawn out exhausting affair that there are whole websites dedicated to helping parents through the process, take it from someone who went through it- its not easy. For example, as part of the process, an unaccountable, nameless, faceless set of people firstly sit in judgment on whether or not your child is eligible to be assessed for a Statement and then again to judge if your child should receive a Statement. You, as a parent or advocate, have no say in either of these decisions- the first one is made on the basis of a single half-hour visit from an Educational Psychologist to the child concerned.

So we have a situation where over half of a pupil group with a disorder that is famous for affecting their ability to communicate with NT’s and whom SENCO’s, parents, teachers, and the Audit Commission believe are not being supported properly in mainstream education are actively excluded from an educational environment that would directly benefit them and allow them to prosper in an educational environment that is right for them. What could possibly be the reason for this situation?

It seems to me that there can only be 2 possible conclusions for this. Firstly, the exclusion of ASD pupils from an education based on need and the intention to reduce Statements could be a moral imperative that the Government feel- that inclusion is the best way to integrate various strands of society. Or it could be that its cheaper to place as many kids as possible, regardless of need, in one environment. I leave it to you to make your own mind up on that.

In the second part of this series, I’ll look at why Special Schools are also not a ‘one size fits all’ solution.

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