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A Dateline Participant Speaks

14 Jun

_This comes from Autism Street. The whole post is here. I’m going to reproduce the post then shut off comments here. Please comment at Autism Street._

My wife recently told me about an acquaintance of ours (through a local online parent group) who had just withdrawn from the Arizona chelation study at the Southwest College of Naturopathic Medicine. It had been I long time since I had exchanged any sort of messages with her or the group, so I sent her an e-mail to ask her about it.

Boy was I in for a wonderful surprise – a return message full of love and acceptance for a wonderful child! This was interesting to me, because I was curious how the influence of media like NBC’s Dateline or Autism Speaks may or may not have played a part in her decision, especially since her daughter had actually appeared in the Dateline segment. I did not specifically mention Dateline or Autism Speaks in my original e-mail to her, but did ask if media was an influence.

We exchanged several more e-mails and discussed her guest blogging about this. Without any further ado, I’d like to welcome a guest blogger to Autism Street who will go by the name Belle. She’ll refer to her daughter as Mulan. I’ll ask Belle two questions, and she’ll provide her answers. Whether or not she fields any comments will be entirely up to her.

*Belle, what influenced your decision to participate?*

_”I had read a lot on chelation, and I was at one point in my life, ready to do “whatever” it took! It’s easy for parents to get hooked on all the hype and “doom and gloom” out there. If at one point I had read that I could get a child as cool and great as Mulan, then maybe I wouldn’t have been so quick to do “whatever” it took.”_

*How did you arrive at the decision to withdraw Mulan from the study?*

_”Thanks to time, discussion with friends, and Mulan herself, I decided to withdraw. I signed up for this about a year ago, got approved for it, and started the process. Since signing up, I had a lot of time to listen to others and to think more about what I was doing.”_

_”Then there’s Mulan. Mulan is doing soo well! I couldn’t ask for a child to be doing as well as her. If I had been told that she’d be doing as well as she is, I wouldn’t have believed what anyone was telling me. I know another local research nurse who has a son who is also doing really well. Sometimes it seems she’s the only one I know who doesn’t talk “doom and gloom”. I am taking her attitude. I do believe that with a lot of hard work on the parents’ part, discipline, and reality, your child can do a lot!”_

_”When I read about someone’s child who is doing such and such, and they attribute it to pills or chelation, I think, oh yeah, Mulan is doing that. And it’s not because of a pill or chelation, it’s because of good old-fashioned hard work! There’s a short movie that someone at [name removed] suggested I watch. It’s about how chelation has supposedly helped their children. It’s horrible! I thought that Mulan could easily be on that as well – I have pictures of her freaking of getting her picture taken, and then I could use her kindergarten picture, before hours of therapy and hard work, etc.”_

_”After seeing the piece on Dateline, and that clip from autism speaks, I am sick and tired of the “doom and gloom” attitude. Dateline showed Mulan for approx. 4 seconds. Both times, it appeared they tried to make her look like a freak. The first time she was up close to the camera and making a face. Those of us who know her, know that she’s vain and loves the camera. My dad always has the video camera and will turn it around so Mulan can see herself. Mulan was just doing her thing in front of the camera. I could see any and all of my kids doing what Mulan was doing, especially if it’s edited carefully. I’m sure I could find all three of my kids looking like freaks – they’re kids! Then they showed her getting her ears checked and she’s hand flapping. Yes, because of autism Mulan is a hand flapper when she’s excited. They couldn’t show the whole story let alone the fact that she’s a child with autism that has never seen this Dr. before, and was excited to have a check up.”_

_”They could have shown Mulan socializing with her siblings or communicating with the doctor, but they didn’t do that. Apparently Dateline would think it okay to have people believe that people with autism don’t socialize or communicate! Now I am going off on a totally different tangent, but I was sort of hoping that after seeing the show I would have changed my mind and decided to “go for it” with Mulan. Instead, it just made me more adamant that I wasn’t going to do this to Mulan. Before the show I just had a lot of fear.”_

_”Mulan has always been healthy. I’ve had her at the Dr. more than once convinced she had strep, and she didn’t. Actually, her siblings get strep, and she doesn’t. It’s weird in a way, but I’m not complaining! Mulan also hasn’t had any surgeries since she’s been diagnosed. She’s had nothing medical done to her, so I have fear of doing anything medically unnecessary to her. Not that I wouldn’t do anything for her medically, I would in a heart beat if she needed it. She doesn’t need DMSA, so I am choosing not to give it to her.”_

_”I want to clarify that I don’t blame the medical community for Mulan’s autism – she was born with it, I know that. I have seen my child take such great steps forward, that I fear giving her anything that might hurt her. I still give her McD’s, and candy with all the food coloring in the world. She will get an Icee at Target on occasion, just like her siblings. I guess some might say those things might hurt her, but that’s called living, and Mulan is living and functioning in her own cool way.”_

_”I just had Mulan’s first habilitation worker quit. This woman is the coolest woman ever. I thanked her for helping Mulan become the weird free spirit that she is. I love my weird free spirit, and I hope others can see how her free spiritedness is actually pretty cool, and not necessarily as weird as they first might think!”_

Dan Olmsted and Andrew Wakefield. Rumour Mongering Ahoy!

14 Jun

UPI journalist Dan Olmsted has released another in his series of autism related pieces. This one is entitled: *The Age of Autism: But is Wakefield Right?*

The piece then goes on to discuss Olmsted’s belief that he may well be. Lets take a critical look at Olmsted and also Wakefield’s beliefs and contrast them with what we know and strongly suspect about Wakefield and the whole MMR debacle. Olmsted begins with:

Let’s put aside the issues surrounding the Lancet paper and concerns about a measles epidemic and go straight to the heart of the matter: Does the MMR cause autism? In other words, is Wakefield right? After looking into the topic for more than a year, I’m very concerned that he may be — that, especially in children whose immune systems have been rendered susceptible by any number of possible exposures, the combined live-virus vaccine has its fingerprints all over numerous cases of regressive autism.

I can well understand Olmsted wishing to slide the inconvenient retraction by the Lancet aside. Unfortunately they cannot be so readily shunted away. This (does MMR cause autism) is at heart, a scientific question. Only well designed, thorough, replicable science can support or refute it. The Lancet paper was _not_ good science. The study group was tiny. It seems that not only were the group of subjects sourced via anti-vaccine lawyers but I have heard rumours that there were not twelve subjects in Wakefield’s original group but actually sixteen and that the ‘extra’ subjects were ignored when their outcomes didn’t support Wakefield’s hypothesis. I hasten to add that that is total rumour but if its true, it raises more questions about this study.

I can also well understand Olmsted’s wish to put aside concerns about a measles epidemic. After all, already this year one life has been claimed by measles and hospitalisation rates are exactly in line with those predicted by experts in 2004. These cannot be comfortable truths for a journalist as one-sided as Mr Olmsted to face.

However, Mr Olmsted wishes us to ignore these things – pretend they don’t matter – so lets humour him and discuss only his narrow view.

Mr Olmsted states that he’s been looking into the matter for over a year. I’ve been looking into the matter nearly three times as long as that. Does that mean I ‘trump’ Olmsted? He says that childrens immune systems have been compromised and that the MMR live virus has ‘its fingerprints’ all over numerous cases of regressive autism. However, as is usual in these reports, Olmsted fails to back up these unsubstantiated claims. Indeed, these are part of the same belief system that has led to the point where Wakefield is being investigated by the GMC.

Does MMR cause autism – its a matter of science, not propaganda. If Olmsted wishes to convince people capable of rational thought then he needs to provide the science.

Has any science so far managed to substantiate Wakefield’s claims? Here’s Ben Goldacre:

But let’s not forget, the Daily Mail was promoting Krigsman’s research back in 2002 as well: at that time, he was putting endoscopes into the bowels of young children with autism, and said he had found evidence of inflammation. 4 years later, looking on PubMed, the standard database for all medical papers, it seems this research still has not been published in a peer reviewed academic journal. Forgive my bluntness, but it seems a shame to go poking around up there if you’re not going to write up your findings properly. Meanwhile the Telegraph says that Krigsman’s most recent unpublished claim is replicating similar work from 1998 by Dr Andrew Wakefield, and 2002 by Professor John O’Leary. But there is no such work from 1998 by Wakefield, at least not in PubMed (in that year he publishes his infamous, very different, and partially retracted Lancet paper on MMR, of course). Meanwhile it is well documented that other labs have tried to reproduce the 2002 O’Leary study and come out with different results, and that the protocol was likely to have problems with false positives because of the tests used: two perfect examples of the importance of research being fully written up and published, so it can be replicated and assessed. Oh, and the newspapers didn’t mention that Andrew Wakefield was also an author on the 2002 study along with O’Leary, nor that Wakefield is also very closely associated with Krigsman (they are doctors together at Thoughtful House, a private autism clinic in the USA).

Bad Science.

So despite the claims of scientific verification from Krigsman’s work lets be clear: this work has not so far met the most basic standard of scientific credibility. Olmsted fails to mention this. It bears repeating: *Does MMR cause autism* is a scientific question. It can only be answered with good science. Krigsman’s work is not good science.

After talking about all the families he’s talked to, Olmsted adds:

You get the picture. “Anecdotal evidence.” But you have to wonder how many of these stories — one is tempted to say, bodies — must pile up before the medical authorities go back and take a fresh look at the issue. This blithe disregard for case histories — for what parents, the supposed bedrock of our “family-friendly” society, say — is one of the most appalling features of the current climate surrounding autism research.

Firstly, I have to say I am _not_ tempted to use the word ‘bodies’ in connection with autistic kids. Given recent events Mr Olmsted would do extremely well to choose his words with a little more care.

Lets also note that the ‘medical authorities’ _have_ taken repeated looks at this issue. The truth is that they can look until the cows come home. If there’s nothing there to find, nothing will be found. Ben Goldacre again:

in the May issue of the Journal of Medical Virology, there was a very similar study, only this one has actually been published. It looked for measles RNA in children with regressive autism after MMR vaccination, much like the Krigsman story. It used tools so powerful they could detect measles RNA down to single figure copy numbers. But they found no evidence of the magic vaccine-strain measles RNA to implicate MMR, and perhaps because of that unfrightening result, the study was loudly ignored by the press.

Readers may recall that as recently as last month, the usual tabloid suspects were screaming about MMR again, this time due to another unpublished poster presentation from Krigsman. Strangely, they failed to mention another IMFAR presentation which failed to replicate Wakefield’s work. No scope for shrieking headlines I guess and no scope for propaganda from Olmsted.

Olmsted also refers to Dr Peter Fletcher:

The official, Dr. Peter Fletcher, became an expert witness for parents’ lawyers, which of course creates a competing interest that needs to be factored in. But Fletcher said his new role gave him access to documents that deeply concerned him.

However, as readers may recall in an earlier piece I wrote at the time, Fletcher brings _nothing_ to the table except vague insinuation and conspiracy mongering. No new science is mentioned or discussed whatsoever.

Lets go through it once again: *Does MMR cause autism?* – this is a question of science. It can only be answered using the scientific method. So far, this science question has been answered in the negative. At some point Olmsted, if he wishes to continue thinking of himself as a journalist, will need to start looking a little more deeply at the issues he writes about. At the moment, he’s not a journalist. He’s a propagandist.

Katie McCarron

12 Jun

Since the horrifying news that three year old Katherine ‘Katie’ McCarron was killed by her mother, a few of us have been in contact with Katie’s Granddad – Mike McCarron.

Mike contacted me after viewing the WMV file of [my daughter] I uploaded to counter the idea that autism was a tragedy and that a killing like this was in any way understandable and we’ve swapped emails since then. I have to come to have an inordinate amount of respect for Mike not just for his utterly transparent love for his grand-daughter but also his lucid refusal to countenance the idea that her death can be in any way rationalised or painted as understandable, despite the mealy mouthed efforts of a few journalists and a couple of bloggers who should know better.

Mike sent me the picture of Katie a week or so ago but asked me not to blog it which was totally understandable. However, as the ‘this is justifiable’ nonsense has increased, Mike feels that its time to show people the beautiful child that we’re supposed to believe it was ‘understandable’ to kill.

Here’s a comment from Mike over on Kristina’s AutismVox blog:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

I’m not ashamed to state that I have cried numerous times since corresponding with Mike. In horror that something so appalling could happen to someone so young and innocent, in recognition of the most abrasive pain I could imagine when talking to Mike and in awe that he remains so lucid and how directed and purposeful his very real anger is:

But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

Everyone should have such a Grandpa.

UPDATE: Stephen at Not Dead Yet also received some photo’s of Katie, as did Kristina.

Geier and Geier ‘Significantly Misrepresent’ Themselves

10 Jun

Kathleen has written part one of a multi-part look at some of the recent actions of those purveyors of Lupron, the Geier’s.

Seems that a new study of theirs; ‘A Clinical and Laboratory Evaluation of Methionine Cycle-Transsulfuration and Androgen Pathway Markers in Children with Autistic Disorders’ was accepted for publication in Hormone Research and published online prior to being published traditionally.

The interesting bit is the claim of institutional affiliation to Department of Biochemistry, George Washington University, Washington, D.C., USA.

Intruiged, Kathleen contacted Dr. Allen Goldstein, Chairman of the GWU Department of Biochemistry and Molecular Biology to ascertain exactly what the Geier’s affiliation to GWU was. His reply was a bombshell and a further mark against the Geier’s honesty and reliability:

He described the affiliation with the Department of Biochemistry in the Hormone Research article as “fallacious,” and stated that it conveyed a “significant misrepresentation” of Mr. Geier’s position in the field of biochemistry.

I urge you to go and read the rest of Kathleen’s investigation into the Geier’s. Its a compulsive read.

As I understand it, this is _far_ from the end of the matter. There will be further parts to this ongoing issue. Keep an eye on the Neurodiversity weblog.

Creatinine, Chelation and Lupron…Oh my!

6 Jun

A recent news segment on NBC in America covered Chelation therapy as a treatment for autism. The response was as predicted. The pro-cure/biomed side went into raptures. Everyone else winced. As a UK resident I have to say that (sorry America) this seems to be a furtherance of the dumbing down of science in the US that has led to both this sort of report appearing on a serious news show and the joke of creationism being taught in science classes.

Anyway, thankfully, these types of things are still viewed by most people (over there and over here) as marginal and not representative of the truth. However, that doesn’t negate the fact that there is a lot of experimentation going on by so called ‘scientists’ and by some parents. My favourite quote so far from some retorting to the Dateline segment is:

A treatment used prior to proof is called an experiment.

ACSH.

So what can be said to be poorly understood and yet still be used?

Lupron for Autism

I recently had an interaction with a number of people on an Autism Biomed board after they stated that Lupron was ‘working miracles in recovering my child’. At least one of these people was someone who had assured me about a year ago that chelation was ‘working miracles in recovering my child’. A part of me fully expects to hear that car battery acid is ‘working miracles in recovering my child’ from the same person a year from now. After that? Tongue of Toad? Eye of Newt?

It was clear that the ‘scientists’ advising these people had not informed them of basic facts about the condition that was allegedly affecting their kids autism. Neither of them had had their childrens hand and wrist radiographed which is the standard way of determining if a child is undergoing Precocious Puberty or not. Basically, If bone age is within 1 year of chronological age, puberty has not started. If bone age is advanced by 2 or more years, puberty likely has been present for a year or more or is progressing more rapidly.

The single most basic fact about Precocious Puberty is that it is immediately subdivided into Central Precocious Puberty (CPP) or Pseudo Precocious Puberty (PPP). It is vital to make this difference as the treatment is different in each division. The division can only be made by testing for premature activation of the hypothalamic-pituitary-gonadal axis. When I asked one of these people if the Geiers (yes, it was they) had subcategorised into CPP or PPP they did not know what I was talking about. They were entirely ignorant of these terms. It was clear neither of the two people I had spoken to had undergone this sub-categorisation.

They claimed it was ‘enough’ to ‘know’ that their children had excess testosterone. One of these children is female. This child’s parent was utterly ignorant of the fact that excess testosterone in females was not called ‘precocious puberty’ but indicative of ‘Androgen excess’. Lupron is not mentioned as a treatment for Androgen Excess.

One other interesting fact about increased testosterone is that in patients diagnosed with PPP, this can result from an excess of vitamins and other dietary supplements. Its common knowledge that this is a common part of DAN! and DAN! style treatment regimes. Yet again, the Geier’s patients parents were entirely unaware of this fact.

Sources

http://www.emedicine.com/ped/topic1882.htm
http://www.emedicine.com/PED/topic1881.htm
http://www.androgenexcesssociety.org/signs.html
http://www.healthatoz.com/healthatoz/Atoz/ency/sex_hormones_tests.jsp

The Role of Creatinine in Relation to Porphyrins and Chelation to Creatinine

I’m not going to go over this subject as well as Not Mercury recently did but I want to highlight a few key concepts from that paper that it seems the authors either missed or didn’t account for.

The paper’s essence is that it is significant the their are elevated levels of Porphyrins in autistic kids. However, they fail to account for the likelihood that this is a false elevation. The study attempts to measure the amount of porphyrins in the urine of their subjects. However, because collecting urine of a standard volume, content and dilution is next to impossible, its necessary to use a stable compound to express the porphyrins as a ratio of – which is where creatinine comes in. So, the paper claims that, relative to creatinine, porphyrins are high in autistic kids.

However, as Not Mercury also highlights, its fairly accepted amongst DAN! practitioners:

Creatinine is often found to be marginal in the urine of autistics, and low creatinine can skew urine analyte results to high levels. So, also take note of creatinine levels if the laboratory results include ratioing to creatinine.

PDF translated to HTML from ARI

And Andrew Wakefield’s colleague, Paul Shattock, also reports low creatinine in autistic kids (see source on Not Mercury blog entry). So why does that matter? Now, I’m no scientist so I was struggling to find a way to visualise this in my head and I came up with the bar chart below. The thin black line is an arbitrary ‘baseline’ (where the creatinine stops and the Porphs start) below which in purple is creatinine levels and above which is Porph levels. Now, in the autistic representation note how the decrease in creatinine has led the baseline measurement for Porph to falsely raise the amount of Porphs. In other words, relative to the baseline, there are not more Porphs as such, but less creatinine. I’m open to interpretation on this by the way – I don’t want it to be misleading.

There are also anecdotal reports of various chelators reducing creatinine further:

my son’s creatinine has come down to 11 by round 3. why is it going down?how can i bring it back to normal? i have been giving glycine to him also during rounds – every 3hrs dmsa+ala

Onibasu.

And:

Importantly, recent data suggest that oral NAC administration > transiently lowers creatinine levels.

PubMed

So here we seem to have a situation wherein autistic children are already noted to have low creatinine levels and that these levels could be even further reduced by the chelators used either in the study itself or by parents externally to the study and still the study authors claim it is significant to epxress Porphs _as a ratio_ of creatinine.

Autism One

Meanwhile, over in Chicago, Autism One has been in full force (or should that be farce?). I’m reliably informed that one of the big draws was David ‘crowd pleaser’ Kirby so I downloaded his slides to have a looksee.

Incredibly, it seems that David Kirby has magically ‘forgotten’ everything he conceded to blogger Citizen cain regarding the use of CDDS data. Lets remind ourselves of what Kirby told Citizen Cain:

…if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis. He [kirby] also conceded that total cases among 3-5 year olds, not changes in the rate of increase is the right measure….

And yet, here we have slides showing Kirby demonstrating the change in the rate of increase, something he has conceded is inaccurate as a measure. He also refers to the increase in cases as ‘new’ cases when its been demonstrated time and time again that these are _not new cases_ . All in all, this is simply more dishonesty from David Kirby.

Autism and autistic people deserve better than this hodge-podge of sloppiness and dishonesty.

iRunman Autistic Celebration Run

30 May

Autistic Youth Runs PEI Tip-to-Tip for Autism Acceptance and Education

(Oyster Bed Bridge, PEI, May 28, 2006) On July 2nd, 2006, 18 year old Alex Bain will leave North Cape in a bid to be the first autistic to run Prince Edward Island tip to tip. Along the way, he hopes to raise $20/km for his almost 300 kilometre trek that will end in East Point on July 15th. The funds will be used to bring internationally recognized expert Dennis Debbaudt to PEI on September 27, 2006, for a series of 3 seminars about what happens and what should happen in encounters between autistics, emergency first-responders and law-enforcement officers.

Almost every weekend, for most of the year, Alex puts on this trademark yellow t-shirt, heads to a charitable road race on the Island. He runs not only for the charity benefiting from each race, but also for autism. Not to raise money to find a “cure” or to “prevent” people like himself from ever being born, the focus of most autism runs, but to raise awareness and acceptance. His recognition as the PEI RoadRunners 2004 Patterson Palmer Rookie of the Year and 2005 Ewen Stewart Inspirational Runner of the Year reflects both his running and advocacy abilities.

Accompanying Alex on her bike, and organizing Mr Debbaudt’s PEI seminar, is Alex’s mother, janet norman-bain, known as “jypsy” to many in the autistic community both locally and internationally through a website she ran from 1995-2005, “Ooops…Wrong Planet! Syndrome” at PlanetAutism.com. jypsy and another of her four children are diagnosed with Aspergers Syndrome, an autistic spectrum diagnosis. jypsy watched Alex start grade 1 unable to speak and graduate from Bluefield High School twelve years later with honours and prizes for top marks in two of his classes. This July she’ll be there to see him fulfill his dream to be the first autistic to run PEI tip to tip and help fundraise to make PEI a safer, more inclusive community for all autistic people.

Studies show that autistic people are no more likely to break the law than non-autistic people, but are 7 times more likely to come into contact with law enforcement officers. Dennis Debbaudt, a professional investigator, journalist and a member of the American Society for Law Enforcement Training (ASLET), is the father of a 21-year-old autistic son. He has educated law enforcement, criminal justice, and education professionals, as well as first-responders, autistics, and parents throughout Canada, the US, and the UK but has yet to present in the Maritimes.

The response of autistic people to encounters with emergency first responders may not always be socially expected or behaviourally typical. Mr. Debbaudt will explain how autistic reactions in some situations, such as running away, unsteadiness, apparently unpredictable or impulsive behaviour, or failure to respond in the expected way, may be misunderstood by first response professionals, resulting in serious consequences. Mr. Debbaudt’s law enforcement and first responder seminars offer tips and options for communications and responses designed to successfully resolve a call involving a person on the autistic spectrum, while his seminar for autistics, parents, caregivers, school personnel and other people, will address the many ways that parents can keep their child secure and safe both in the home and in the community and how autistics can increase their own safety and security. Everyone will come away with a good, practical understanding of the best approaches to make interactions with autistics more informed, safer and less stressful for all involved.

Autism is a neurological difference classified as a developmental disability. Autistic people have atypical behaviours in three areas: social interaction, communication, and restricted interests or repetitive behaviours. Autistics are different at the most basic level available: how they experience the world, and how they learn from it. Autism presents with measurable differences in perception, attention, memory, intelligence, etc. The autistic order and progress of development is different from the typical version as is autistic brain structure, allocation, and function. Autism presents strengths not available to the typical population, but the different pattern of strengths and weaknesses characterizing autism results in many difficulties as atypical needs and adaptive but atypical autistic behaviours are at odds with what is considered or expected as “normal”.

The PEI Council of the Disabled is assisting PlanetAutism.com in this fundraiser and will be handling the donations. Charitable donations can be made to the “PEI Council of the Disabled” (Runman Fund) by mail or at any Credit Union across PEI. Online donations can be made on the Run’s website, PlanetAutism.com/runman where much more information about the Run can be found including the daily schedule and a blog where you can follow the Run day by day.

MMR and Metal Studies – Empty Discussions

28 May

Two new (not sure what to call them) papers? Abstracts? Press releases? Came out this week concerning autism and vaccines. Also, one _actual_ study was released.

Study number one is entitled…well, actually, as far as I can tell, it doesn’t have a name yet. The first draft (which I saw in October last year) was called *Porphyrinuria in childhood autistic disorder*. The authors are Robert Nataf, MD Corinne Skorupka, MD, Alain Lam, BSc , Anthea Springbett, PhD, Lorene Amet, DPhil and Richard Lathe, DSc.

Richard Lathe is the heavy hitter in this bunch. He’s quoted in New Scientist as saying:

It’s highly likely that heavy metals are responsible for childhood autistic disorder in a majority of cases

New Scientist.

Strong words. However, as I said at the top of this piece, this study has not yet even been published yet. The only scientists who’ve read it are the scientists that performed the study. As far as I know, its not even been accepted for publication by Toxicology and Applied Pharmacology. I _do_ know it was submitted to The Lancet and I’m guessing as the authors moved on to Toxicology and Applied Pharmacology that it was rejected by The Lancet.

I can’t discuss the science as it may have changed since the first draft I have a copy of. In the absence of the science, we can’t really discuss much of any importance.

However, we can take a look ‘behind the curtain’ at some of those names can’t we?

_Lorène Amet_ is an Editor of Medical Veritas – a journal that PubMed does not, as far as I know, index. MV’s ‘mission statement’ includes:

MV…recognizes that medical modalities promoted by public health departments and authorities are often compromised by conflicts of interest with pharmaceutical companies and other political and personal agendas. These areas of detrimental influence include, but are not limited to, the following: vaccinations, pharmaceutical drugs, pregnancy, childbirth and child care practices, treatments for cancer, AIDS and other diseases, food additives, pesticides and herbicides, water fluoridation,d ental procedures, including amalgams, medical procedures and surgeries

Nothing like going in with a preconceived agenda eh? That’ll help with scientific objectivity.

Ms Amet’s colleagues from Medical Veritas include Mohammed Ali Al-Bayati, who doesn’t believe HIV leads to AIDS, as well as someone called Kenneth P. Soller, MD who I’m guessing is Kenneth P. S *t* oller, MD – our new friend who likes HBOT for autism and who tried to smear Paul Shattuck and Andrew ‘Wakers’ Wakefield.

Source – NB: there is at least one person who is now deceased listed on that page.

Here’s some snippets from Ms Amet’s CV:

In the process of setting up an Autism Treatment clinic with the charity Autism Treatment Trust (former Action Against Autism). Principal Scientist.

(UK version of Generation Rescue led by Bill Welsh)

Received DAN! (Defeat Autism Now) doctor accreditation, Dec., 2005. Initiated and organised with Action Against Autism a conference called Treating Autism, Edinburgh UK, October 14-15, 2005. Participated to two clinic days with Dr. McCandless and Dr. Usman (16 children with autism). October 16-17, 2005.

Well, I guess we should all be reassured at how impartial any study featuring a DAN! practitioner and Editor of Medical Veritas will be. I sincerely hope their study has moved on since the first draft.

The second study/paper/abstract/thingy does at least have an actual title. It’s title is: *PERSISTENT ILEAL MEASLES VIRUS IN A
LARGE COHORT OF REGRESSIVE AUTISTIC CHILDREN WITH ILEOCOLITIS AND LYMPHONODULAR HYPERPLASIA: REVISITATION OF AN EARLIER STUDY* which is a bit of a mouthful. It basically claims to substantiate Andrew Wakefields earlier findings with the MMR vaccine.

Yet again, however, despite this being reported in at least two mainstream newspapers, it should be noted that the actual study has not been published. It will be discussed at the upcoming IMFAR conference in Canada but no-one has seen the paper yet. The presentation could not even legitimately be referred to as an abstract yet.

The authors are: Steve Walker, Karin Hepner, Jeffrey Segal and Arthur Krigsman.

There appears to be a fund raiser for this study on the website of the NAA where Andrew Wakefield and Jeff Bradstreet (who apparently used to recommend exorcism for autistic kids) are listed as ‘consultants’.

Lets not forget that the NAA have made a big deal of ‘outing’ Paul Shattuck’s non-existent connection to Merck so I wonder if we’ll be seeing them play the ‘conflict of interest’ card in the case of this study? Doubtful I’d guess.

However, the big connection here is Thoughtful House, Andrew Wakefield’s project. Steve Walker, one of the authors listed above, is on the board alongside such scientific luminaries as, uh, Martie Maguire of the Dixie Chicks.

A keen eyed observer might also note that one of the other authors is a partner of Andrew Wakefield’s. This hardly instils a great deal of hope in the objectivity of this paper.

So there’s our two non-papers which we can’t really discuss the science of as none has been made available. However, that hasn’t stopped people from going ahead and reporting on them as if it were.

The third bit of news from the autism/vaccine issue is (gasp!) an _actual_ paper, which has been peer reviewed, submitted and accepted for publication in a decent journal. Its title is: *Is There a ‘Regressive Phenotype’ of Autism Spectrum Disorder Associated with the Measles-Mumps-Rubella Vaccine? A CPEA Study.*

And what does it say?

There was no evidence that onset of autistic symptoms or of regression was related to measles-mumps-rubella vaccination.

Of course, that story doesn’t get mentioned – its not as interesting as wild speculation.

The Judge Rotenberg Center

26 May

As we tootle about our lives we are sometimes unaware of the full horror of the human experience and how barbarity often exists justs out of sight. For people who are adjudged as needing to receive ‘treatments’, barbarity is in plain sight all the time.

The Judge Rotenberg Centre (note the happy colours) describes itself as:

The Judge Rotenberg Educational Center (JRC) is a special needs school in Canton, Massachusetts serving both higher-functioning students with conduct, behavior, emotional, and/or psychiatric problems and lower-functioning students with autistic-like behaviors

Wait for the animated gif to revolve a few times. Note the happy faces of the students. Note the lovely grounds.

The JRC achieves its results by administering an electric shock to its students when they are in need of corrective action. Students carry around backpacks to ensure they are close to the source of the corrective action. The device/process is called ‘GED’ – Graduated Electronic Decelerator.

Massachusetts Division of Public Licensure is investigating reports of burns to the skin of at least one student. A former worker claimed that JRC staff failed to move the electrodes each day as required to keep from burning the boy’s skin. Director Matthew Israel states that:

Our skin shock device does not cause burns when it is applied. Very, very occasionally, a device might cause a superficial mark on the skin, from which the skin recovers quickly.

Source

A ‘superficial mark’. Right. I guess ‘superficial’ might be in the eye of the beholder Mr Israel. Or, in this case, the skin of a young man.

The JRC also has an interesting take on diet – from its ‘foods to avoid’ section:

1. Avoid all red meat, including beef, pork, and lamb. All are rich in fat, cholesterol, and other harmful constituents.
2. Avoid all poultry and fish. Poultry has about the same amount of cholesterol as red meat, while fish varies, depending on type. Some fish are higher in cholesterol than red meat, others lower.
3. Avoid all dairy products, including milk, yogurt and cheese. Low-fat dairy products are not recommended because of potential health hazards including allergies, childhood diabetes, arthritis and lactose intolerance.
4. Avoid all oil, including olive, safflower, peanut and corn oil. Oil is simply a liquid form of fat.
5. Avoid eggs. Eggs are abundant in fat and cholesterol.
6. Avoid nuts, seeds, avocados, olives and soybean products (including tofu, soy cheese, and soy milk). Soybean products are high in fat, unless they have been specially processed (low-fat varieties are also not recommended).
7. Avoid all dried fruit and fruit juices. (Eat the whole fruit instead).
8. Avoid all flour products, such as breads, bagels and pretzels. The less a food is processed the better it is for weight loss. Flour products are composed of fragments of grain, or relatively small particles, which increase absorption and slow weight loss.

And then from an ex-employee:

A 12-year-old autistic girl wasted away to a “bag of bones” under a harsh dietary regime imposed by the controversial Judge Rotenberg Center for troubled kids, a former employee charges.

Source.

The JRC has also made the news recently by lying about its staff.

The Boston Herald reported Wednesday that the Massachusetts Division of Public Licensure is investigating at least 10 JRC therapists for allegedly practicing psychology without a license. The allegations were initially made by New York lawyer Kenneth Mollins, who complained last week that 14 of the 17 clinicians listed on the residential school’s website are not licensed psychologists. After Mollins’ allegations became public, JRC removed the title of psychologist from the names of all of its therapists that do not have licenses. “We have acknowledged we were giving the incorrect title,” JRC attorney Michael Flammia told the Herald. A district court magistrate will decide next week whether criminal charges will be filed against the 10 therapists and possibly four others that are also under investigation.

Source.

These are just the things that have been discovered.

My fellow Brit, Mike Stanton blogged about the JRC back in April. Amongst the commenters was someone calling themselves ‘Jackie’. Jackie had the following to say:

The director of JRC encourages staff members to use electroshock to quitting smoking, makes staff members watch slaughter house movies as a condition of their advancement, and is starving some of the patients who can not thrive on his radical vegetarian diet.

and

The worst shock punishment is when staff straps a child to a board and tell her that she will be shocked randomly five times in the next hour. Here the ultimate punishment is not the shock but the hour long terror.

and

However, the worst punishment is when food is withheld from a child for bad behavior. Every child’s behavior deteriorates when food is withheld so JRC becomes directly responsible for the behavior for which the child is being punished.

Director Matthew Israel seems to be a fairly typical quack. When challenged to present evidence for his aversive-based regime he says:

Our mission is to function as a school, or service agency, and not as a research agency. Indeed, the funds we receive for our services are not supposed to be spent on research.

Which is a fairly standard altie method of avoiding the necessity for validating quackery. Israel goes on to cite the NIH ‘Treatment of Destructive Behaviors in Persons With Developmental Disabilities’ statement from 1987 as supporting his practices. However upon visiting the page in question one finds a large disclaimer in bold, red, emphasised, uppercase type:

THIS DOCUMENT IS NO LONGER VIEWED BY NIH AS GUIDANCE FOR CURRENT MEDICAL PRACTICE.

I can find next to nothing in Pubmed regarding aversive based treatments.

However, one of the most disturbing aspects of the JRC is the readiness with which it is embraced by its students parents. the JRC maintains a blog in which it posts messages of support from students parents. None of the students views are represented. A typical example is below:

_”Before placing my daughter Julissa at JRC, I suffered tremendously because of her behaviors. She did not obey my rules, she did not listed to me, and she used to go out without permission. When she returned home and I tried to talk to her, she used to get very angry and hit me. When she did something wrong and I tried to give her advice, it was for nothing because she did not listed. One time, she even took money from me without me knowing. She took my ATM card, and since she knew my pin number, she took out $700.00 dollars that I was saving for that month’s rent. At home, we hardly ever slept. My other daughter, my granddaughter, and I were very nervous because of Jusissa’s behaviors.”_

_”Julissa was admitted to the Metropolitan Hospital in two occasions. Also, she was admitted once at Holewood Hospital in Queens. Every time she left the hospitals and returned home, she exhibited the same behaviors.”_

_”Even though my daughter was admitted into two different hospitals and was placed into different treatments, and many prescribed medications, nothing really helped her. I give my testimony of faith that nothing has been better than the treatment or better said the discipline that JRC school has.”_

This sounds (to me) like a naughty girl. But a girl deserving of the sort of regime described above? Electro therapy because a child wouldn’t follow her mother’s rules? On what grounds are these good criteria for this regime?

When I first heard about this, I thought it was a joke. Unfortunately its not.

Katherine ‘Katie’ McCarron

23 May

This is about the third draft of this post that I’ve written. The others were too angry or too sad to be constructive or valid. This is an awful story for numerous reasons. First, Katherine was three years old. Little more than a baby. Secondly was the manner of her death. Her mother took a plastic bag and suffocated her with it. I am finding it difficult to move past the awful reality of how terrified Katherine must’ve been in her last few minutes alive.

Katherine was autistic. Her mother was a doctor. Friends are quoted as saying that she spent time on forums helping other people. As far as her child went, it seems she was deep into the ‘treatment’ option. A post touching on Katherine’s death confirms that McCarron was a supporter and purveyor of biomedical treatment:

Dr. McCarron (a pathologist) was asking me for my experiences with the Geier protocol. (her daughter Katherine was not on the protocol….She was a friend of FAIR’s medical director, Dr. Ayoub… and pretty friendly with Julie, our research director (with whom she’s had several phone conversations). She is such a smart lady… and caring person/loving mother who knows so much about biomed, I had actually thought to invite her to JOIN FAIR!

A friend of hers states:

Meanwhile, Karen McCarron had busied herself in an effort to find clues to the puzzle of her daughter’s autism. “She read every book. She was trying so hard, pursuing every lead,” the friend says.

I wish that Karen McCarron had not been looking so hard for clues to the puzzle of her daughters autism. I wish instead that she had concentrated on looking for clues to the reality of her daughter. I wish that she had read the recent paper on acceptance bringing benefits instead of reading every book, pursuing every lead to find clues to autism. Her friends go on to say that she had become disillusioned and worried as Katherine seemed to ‘begin regressing’. Up until then she had been attending a specialist autism clinic in North Carolina. I wonder what sort of clinic it was. Maybe it was this one with what seems to be a TEACCH style program. Then again, with someone who ‘knows so much about biomed’ it seems doubtful. Who knows for sure? Not me.

The upshot of all this was that…

The setback only exacerbated Karen McCarron’s difficulty in accepting her daughter’s condition, her friend says. Unlike coping parents of autistic children, McCarron did not go through a grieving process.

This grieving process is necessary. Jim Sinclair in his outstanding essay Don’t Mourn For Us says:

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize.

This is true, but as Sinclair _also_ states, one has to separate grieving for an _event_ and grieving for the _child_, which is not healthy.

…But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them.

It sounds like McCarron was unable to separate the event from the child and the quoted submerging herself in the ‘effort to find clues to the puzzle’ certainly bears that out.

The great tragedy in writing this piece is that I’m aware that I know much more about Karen McCarron than I do Katherine. No paper has written a piece about what she liked to do. No paper relates what her favourite toy was, or if she liked to rock in front of the TV. I try to think of her doing these things as a way to stop thinking about the way she died. However, I have read lots of pious exhortations to pray for Karen McCarron. The pompous piety of such drivel makes my stomach churn and reminds me of other deaths of autistic children where there were calls for prayers for the family and scant sympathy for the dead child concerned. This may be a first (and possibly last) for this blog but I totally agree with Lenny Schafer when he wrote in a recent SAR:

….when a child is killed there more is involved here than a debate over the proper level of support services families deserve to expect. The first and foremost response to the news of such horrible things of a child being so destroyed should be moral outrage. The first reaction should not be “oh poor mom, if she only had better services. . .” The primary cause of death of that girl, and too many others like her, was not lack of services. To either say or imply so is the saddest of distortions — and such sentiments helps shift responsibility for these acts away from those who perpetrate them. An abstract concept about levels of service did not put a plastic bag over the head of little Katie to smother her — a real human being did so.

I wrote at the top if this post that aside from the sadness, I feel anger. I’m trying to temper that down but I am angry with the immediate association my mind made when I heard about Katharine’s death.

On 9th may, Autism Speaks, an organisation that has no autistic members at board level, released a short film called ‘Autism Every Day’. If you want to view it, you’ll have to google it as I’m certainly not going to link to it.

This video has to be seen in its proper context. Its a fundraiser. Its a way of soliciting money from people via pity and tragedy. Having watched the film I was struck by several things.

The film is entirely negative about autism. The opening scenes consist of autistic kids having meltdowns. No one seems to be addressing the fact that autistic kids are susceptible to changes in routine and that hence the cameras and crew are probably deeply unsettling.

At one point in the film, a young autistic girl a couple of years older than my daughter tries to retreat the refuge of her room. The director takes it upon himself to get a camera to follow her. The result is both predictable and probably considered great footage.

The editor seems to believe that no men are concerned about autism. I spotted two Dads (I presume they were Dads). The vast majority of the film interviewed women. I guess its easier to solicit money when you can create the belief that the autism community is parented mainly by single mothers.

The most chilling part of the film came when one of the mothers talked about how she had considered killing herself and her autistic daughter. She related this whilst her daughter was in the room. She concluded this segment by saying that the only reason she didn’t do it was her NT child.

This film was released on May 9th and consequently shown on the US nationally broadcast Don Imus show. Katherine McCarron was murdered by her mum on the 13th.

No one is claiming parenting children is easy. It is not. No one is claiming that parenting children with special needs is easy. Its not. But at some point we have to say to ourselves – yeah OK, this is hard. We have it harder than parents of NT kids…..so what?

Moving past and getting on is as easy or as hard as you want to make it. I don’t want pity. I don’t want sympathy. What I want is understanding. Genuine comprehension. Cynically manipulative pieces like ‘Autism Every Day’ will not aid comprehension. It does not show reality. It shows the bad things. A lot of the bad things in this piece seemed induced either purposefully or by ignorance. I am not saying bad things don’t happen, I am saying they are _far_ from the whole story.

Katherine didn’t live long enough to live in acceptance. Her mother was so intent on autism, she never saw the autistic child. She decided that at three years old Katherine had had her chance and that she, as her mother, was a fit person to judge her undeserving of more life. Autism Speaks? No. ‘Autism’ was never given a chance to speak in this case. Autism’s parent removed that option.

My daughter is three years older than Katherine McCarron was when she died. At three Katherine and Megan were probably very similar. I don’t know if they shared the same interests or not but I hope they did because Meg is one of the happiest children I know. What she does ‘every day’ makes her happy.

I want to share some aspects of Megan’s life with you all – one of the things she likes the most and one of her favourite songs. I want you to see that ‘autism every day’ is not black or white. I want you to see that our children live in a place where their potential is just the same as everyone elses’s. Nobody deserves to die at age three. Especially for the pathetic reason that they happen to be autistic.

As you watch my daughter, please remember Katherine McCarron. I hope she had a favourite song and some days in the sun.

Beautiful Autism – WMV file (Windows Media Player), 30mb download, sound required.

The Shape Of An Elephant

17 May

Remember this old Bhuddist parable?

Five blind men of Savatthi are all describing an elephant. The problem is that one grabs the tail, the other a leg, the other the side, the other an ear and the fifth, the tusk. Each, remaining blindfolded, seeks to articulate the attributes of an elephant. The one who grabbed the tail insisted that the elephant was like a rope. The one who grabbed the leg was as certain that an elephant was not like a rope, but a tree. The one who was feeling the side of the elephant was convinced that an elephant was like a mud baked wall. The fourth blind man, feeling the ear, was shocked that the others could not understand that the elephant was like a banana leaf. The fifth denounced them all as he held to the tusk, insisting that an elephant was most like a brandished sword.

Every time I hear talk about the ‘autism epidemic’ I remember this parable.

The only way we can _definitively_ establish if thiomersal (or any other vaccine ingredient) causes autism is to take a hundred kids and do a double blind study involving injecting them with either an applicable amount of thiomersal containing vaccines or a control over an established time period.

Obviously, thats never going to happen. Firstly there are the obvious ethics of such a thing – with the prevailing beliefs about what autism is, no parent is going to risk ‘causing’ autism. Secondly there is the more practical reason that there aren’t really any thiomersal containing vaccines left in the West anymore – hence Burbacher’s need to get vaccines and then _add_ thiomersal to them. I suppose our ficticious study could do that but nobody really knows what confounders there may be in such an action. Burbacher certainly didn’t control for them.

So, what else can we do to try and establish if thiomersal (or whatever) can cause autism?

We can examine the symptoms of mercury poisoning (in the case of thiomersal) and see if there seems to be a relationship with autism. This is in essence what the Bernard et al paper tried to do. They concluded there _was_ a link but a closer examination of the paper shows that there is _not one_ common symptom between the diagnstic symptoms of mercury poisoning and the DSM(IV) diagnostic criteria for autism. This fact usually results in two counter-claims. Firstly that the DSM(IV) is not ‘up to the job’ of reflecting the current state of knowledge about autism. Secondly, that autism is such a novel form of mercury poisoning that autism is totally different from all other forms of mercury poisoning.

The first objection is essentially a call to retro-fit the DSM(IV) to fit one persons own beliefs about autism and thiomersal. This is pointless. The DSM criteria (which _are_ periodically adjusted) reflect the symptoms it requires to fulfil a diagnosis of ASD. This means the symptoms are common to _all_ autistic people. People have quoted gut issues, constipation and various other issues to me as ‘evidence’ of the damage resulting in autism, that thiomersal can do. Trouble is, none of the things that get quoted at me are common to all autistic people. These things may be comorbidities. If people have found ways to treat debilitating comorbidities then more power to them I say. I do exactly the same every time I administer a puff of a ventolin inhaler to my daughter. People then go on to say, well, maybe we should start sub-dividing autism into different ‘types’. However, we have no idea what prevalence these ‘sub-types’ might have. As far as we know they might only exist in statistically insignificant numbers that wouldn’t justify a sub-type categorisation. One of the biggest comorbidities is epilepsy. Should we create a sub-category of ‘epileptic autism’. Why? The underlying autism would be just the same. No – this is the very reason why secondary conditions are called comorbidities and not subtypes.

The second theory – that autism is so unique it doesn’t resemble any other form of mercury poisoning – is very hard to take seriously. Anorexia appears to be common across all types of mercury poisoning (its mentioned in Mad Hatters Disease, Pinks Disease and typical mercury poisoning) – why would it skip autism? Occams Razor applies here. The simplest explanation is one which requires no mangling/disappearing/ignoring of known facts – autism doesn’t really resemble mercury poisoning.

So whats next? Epidemiology. We’re left with looking at the numbers.

The ‘autism epidemic’ is central to the thiomersal hypothesis. The argument goes that as thiomersal useage increased both temporaly (vaccines were administered in shorter time frames) and in amount (maximum body burden in the US was 187.5 ug of Hg) that the number of autism diagnosis increased.

The main problem with the epidemic idea is that this chain of events is _far_ from established. The reason is mainly the quality of the underlying data.

There are three main US sources for prevalence data – the Dept of Education, VAERS and CDDS.

Many autism advocacy groups use the data collected by the US Department of Education (USDE) to show a rapidly increasing prevalence of autism. Closer examination of these data to follow each birth-year cohort reveals anomalies within the USDE data on autism. The USDE data show not only a rise in overall autism prevalence with time but also a significant and nearly linear rise in autism prevalence within a birth-year cohort as it ages, with significant numbers of new cases as late as 17 years of age. In addition, an unexpected reduction in the rise of autism prevalence occurs in most cohorts at 12 years of age, the age when most children would be entering middle school. These anomalies point to internal problems in the USDE data that make them *unsuitable for tracking autism prevalence*.

Source.

This is a shame but Jim Laidler is absolutely correct that we must use good, accurate data – USDE data clearly isn’t.

VAERS has massive problems. It allows anyone to enter any data at any time. I recently demonstrated this when I, a UK citizen, managed to submit a VAERS entry stating that a vaccine had turned my daughter into Wonder Woman. Clearly, this is not an acceptable source.

CDDS is the most contraversial. Rick Rollens has toally misintrpretted the data time after time. CDDS themselves state that their data should not be used for tracking autism prevalence. However, if it is insisted that we _do_ use CDDS data then we need to be clear about its use. Rick Rollens lumped all stats from all age groups together – quite obviously this results in meaningless data. As David Kirby conceeded:

…total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

When one does isolate this cohort things are very different. In this cohort, nnot only are autism cases still rising, in the last quarter, the increase in the rate of increase is climbing.In other words, when one uses the correct group of cases to examine, data that David Kirby has referred to as ‘the Gold Standard’ for testing prevalence, shows that autism cases are still rising despite his statement in the New York Times in *2005* that:

Because autism is usually diagnosed sometime between a child’s third and fourth birthdays and thimerosal was largely removed from childhood vaccines in 2001, the incidence of autism should fall this year.

However, despite all this, we need to rememember that CDDS disclaimers appply to our interpretation of the data as well as Rollen’s or Kirby’s. However, ours are more accurate and at least are preformed on the right section of the data.

Make sure to read Joseph’s first comment in this thread which addresses another failing of this data I forgot to address.

So there are very large problems with the epidemiology as well. This is vexing and means, as Paul Shattuck recently concluded, that the true growth of autism cannot be realistically determined. So we’re left with the opinions and research of experts – people who study autism. What do they say?

Almost to a man they say that the idea of an epidemic is questionable. They state there may well have been a rise in _numbers_ but not necessarily a rise in _prevalence_. The distinction is important.

What they say is that improved tests and more recognition adds up to more diagnosis. This is simple common sense. If you know what you’re looking for, you’ll find more of it than you would if you _didn’t_ know what you were looking for.

What do we know that might support this opinion? Here are a few ideas from my neck of the woods.

In 2004, an ‘autism audit‘ was performed in Scotland. One of the questions the audit asked was how accurate they thought the prevalence rate estimates were for their area. 45% of authorities who responded made a point of noting that they felt diagnosis for adults was very underrepresented. For example, Perth and Kinross council stated

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

Also, in a New Scientist piece last year, the findings of the University of Nottingham were reported. The team reexamined data from the 1970’s which resulted in five diagnosis. Using modern diagnostic criteria, the team found 56 cases, a ten-fold increase.

Lastly, earlier this year, Health Minister Liam Byrne reported figures that demonstrated autism diagnoses for children have nearly doubled in 8 years from 3100 to 6170. Meanwhile adult diagnoses have nearly tripled in the same period from 1120 to 3000.

That seems to pretty firmly establish the idea of widescale underdiagnosis. What about misdiagnosis? From its very start as a categorised diagnosis, autism has been misdiagnosed. Kanner mentioned several of his patients were diagnosed with schizophrenia. However, as Shattuck _also_ concluded, its not possible to ascertain to what degree diagnostic substitution in the past has resulted in more cases now we know better.

A fascinating news article caught my eye this morning and led to this post. It seems that even _after_ we factor in more availability of diagnosis and better tests for it, most doctors still don’t screen for autism because a lot don’t know how.

The study of 255 Maryland and Delaware pediatricians found that 209 (82 percent) said they regularly screen their patients for general developmental delays, but only 20 (8 percent) of them said they regularly screen for ASD. Of the pediatricians who said they do not routinely screen for ASD, 62 percent said they didn’t do it because they weren’t familiar with the screening tools.

Source.

Remember that this is in a time when awareness and screening tools are better than they’ve ever been – if they’re like this now, just imagine how bad they must’ve been 10, 15 or 20 years ago.

Do you see a rope? A tree? A wall? A leaf? Maybe a sword? Or do you put these things together and percieve an elephant?

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