Archive | September, 2009

Murderers should not be pitied

30 Sep

The deaths of a man and his 11-year-old autistic son on Sunday were the result of a murder-suicide, Edmonton police said….”To say that this can’t happen for other families,” Phillips said as her eyes welled up with tears talking about the tragedy. “The dad just felt he couldn’t do it any longer and he just didn’t think he could get the help he needed.”

So? So what? We all struggle. Its damned hard, we all lack services, all autism parents all over the world and guess what? We don’t murder our kids.

Don’t pity this murderer, don’t enable pity for this murderer, don’t blame lack of services for excusing a murderer and try to remember not to kill your children today, okay?

Disgusted.

1 in 100 adults are autistic

30 Sep

A recent report by the Information Centre of the UK’s National Health Service says that the autism prevalence for adults is about 1 in 100.

The report, Autism Spectrum Disorders in adults living in households throughout England, states:

Using this recommended threshold score on the ADOS, 1.0%of the adult population had ASD. The rate was higher in men (1.8%) than women (0.2%), which fits with the profile found in childhood population studies.

This isn’t very new news, Anthony Cox and Kev Leitch on this blog have already discussed this.

I would suggest that the first reaction from pretty much everyone (including myself) was wrong.

What should the take-away message be from this?

Simple–there are a lot of unidentified adult autistics who are likely getting little, no, or inappropriate support.

From the report:

“Perhaps most important of all is the finding that adults with ASD are socially disadvantaged, less well educationally qualified, less able intellectually and possibly under-supported by services. Much of this could be alleviated with greater involvement of existing established social, educational, welfare and health care services.

Another point that really sticks out to me is:

There was no indication of any increased use of treatment or services for mental or emotional problems among people with ASD.

We don’t know if this is because they don’t need more services or they just aren’t getting them.

Two more statistics are also worth pointing out: 4.5% of unmarried male adults are identified as ASD. 8% of male adults in social housing are identified as ASD.

That’s huge. Imagine walking through a specific housing complex and 1 in 12 men you see are autistic.

Now that I am done lecturing everyone (including myself) about what I think the important message is from this report, let’s take a look at the report itself. Specifically, let’s consider the complaints that are being levied against it.

The first thing that struck me is that this is a report, not a published study. It is not, to my knowledge, peer reviewed in the same sense as a journal article. It is in the same class as the MMWR reports that the CDC puts out (a government report) that are used by almost everyone to discuss the prevalence of autism. So, if you use 1 in 150 or 1 in 166 prevalence numbers, don’t complain about this UK report being non-peer reviewed.

People are complaining about how the study was conducted. Here is the basic process:

A. Phase one AQ-20 self-completion screen
B. Selection of cases for phase two assessment
C. Phase two ADOS assessment of a subset of cases
D. Weighting to adjust for selection probabilities and non-response.

This was not worded well, since many people assume that the phase one screen only used the AQ-20. As I will discuss below, this is not the case.

The initial screen started by identifying addresses that were residences, and selecting some by random selection. They selected 13,171 possible households for phase-1. Of these, 57% agreed to respond.

9% of sampled addresses were ineligible because they contained no private households, while 4%were addresses of unknown eligibility (see Section 3.2.5). This left an estimated base of 13,171 known eligible or probable eligible households for the phase one interview. The proportion of selected adults who agreed to take part in an initial interview is shown in Figure 3B. At the phase one interview, 57% of those eligible agreed to take part in an interview. This included 50 partial interviews where the respondent completed the service use and CIS-R modules, but did not reach the end of the interview.

These interviews were not just the AQ-20 screen, as noted below:

The phase one interviews were carried out by NatCen interviewers. These included structured assessments and screening instruments for mental disorders, as well as questions about other topics, such as general health, service use, risk factors and demographics. These interviews lasted about 90 minutes on average.

90 minutes per interview, with 7,353 full interviews works out to 5.3 man-years of labor.

This was no small effort.

Many complaints I have seen concentrate on the AQ-20 test. The full AQ test, or Autism Quotient, is a product of the Cambridge Autism Research Centre, and has been studied already. It is usually a 50 question test, but it was shortened to 20 questions (hence AQ20) and adapted for the NHS survey. They shortened the AQ to save time.

Many people have been confused that this short questionnaire was the method used to make the autism diagnoses. People pull questions out and question whether they could be used to diagnose autism. The AQ20 wasn’t used to make the diagnoses. It was only a part of the phase-one, pre-screen, part of the study. The diagnoses were made using the ADOS.

They used the information from phase 1 to select a smaller subgroup for the more intensive phase-2 part of the study. Amongst this smaller group, the researchers chose people they thought were more likely to have psychosis, Asperger syndrome or personality disorder.

7461 respondents provided a productive phase one interview. Of these 58 were proxy respondents and therefore not eligible for the phase two interview (see Figure 3E). A probability of selection was calculated for each respondent based on their answers to the phase one screening questions on psychosis, Asperger syndrome, and personality disorder: as outlined in Section 3.2.6. 5,329 respondents had a probability of selection of greater than zero: 4050 of these also agreed to be recontacted for a phase two interview (76%). After the application of the highest of the four disorder specific sampling fractions, 849 respondents were selected for a phase two interview. Phase two interviews were conducted with 630 of these (74%).

618 of the 630 people who underwent the phase-2 interviews were given the ADOS test. A score of 10 on the ADOS was chosen to indicate a diagnosis of an ASD. Of these, 19 scored above 10 on the test and were diagnosed as having an ASD.

If one took these data to calculate a crude prevalence, a value of 19/618 or about 3% (1 in 32) would be obtained. No one is saying this is an accurate estimate, but it is worth noting for this reason: quite obviously, the phase-1 screen was successful in finding a larger number of autistics than

These data were weighted to estimate a prevalence for the overall study group, including non-responders. They came up with a prevalence of 1% (1.8% for males 0.2% for females).

Here are some of the complaints I have read about this report:

1) They define adult with ages as young as 16.

this is supposed to be a sign that they are trying to fudge the data by including people who are really part of the so-called “epidemic”.

Well, the UK Census defines adults as people age 16 and over. If including 16 and 17 year olds were a problem, one would expect the younger age category to have a much higher prevalence. It doesn’t.

age group 16-44: prevalence 1.1%
age group 45-74: prevalence 0.9%
age group 75+: prevalence 0.8%

(from table 2B)

Another complaint is that there were no ethnic or racial minorities in the group of 19 identified autistics. This is a good check for internal consistency, but it isn’t a valuable check in this case.

The UK has about 90% white population. They tested 618 individuals with the ADOS. If the selection were random in ethnicity, they would have 61 minority participants. A 1% autism rate would lead us to expect 0.6 ethnic minority autistics.

People have complained that the study only shows adults in residential housing. I.e. they didn’t check institutions.

The report is very clear about this (it is even in the title). They note:

The sample for APMS 2007 was designed to be representative of the population living in private households (that is, people not living in communal establishments) in England. People living in institutions are more likely than those living in private households to have ASD, however this group was not covered in the survey reported on here and this should be borne in mind when considering the survey’s account. At the time of the 2001 Census, 2% of the English population aged 16 years or over were resident in a communal establishment.

So, yes, by leaving out those in institutions they didn’t measure the prevalence in the total UK population. That is a limitation of this report. The prevalence in the institutions is very likely to be higher than in residential settings. I.e. they would have found more autistics had they look in institutions and they would have found a higher prevalence overall.

One complaint is that they only identified 19 adult autistics in phase two. This is definitely worth considering as that puts some big error bars on the results. This becomes especially when they try to break the results down by age, gender, or other category.

It has been proposed that one can’t extrapolate from the 19.

But, just for fun, let’s make the assumption that the 19 adult autistics ID’d in phase 2 group (of about 618) are all there would be in the entire group studied (7353).

That would give a prevalence of 25 per 10,000.

This is much higher than people have been claiming the prevalence should be amongst adults. Many people claim the prevalence rate for adults should be about 1 in 10,0000 or 3.3 in 10,000.

To put it simply, those claiming there is an epidemic of autism are off by at least a factor of 7.

Or, to put it another way,

It isn’t a question of whether there are factors such as widening of the criteria or diagnositic substitution/accretion that have caused some of the rise in the autism “rates”. The question is what factors have been in play and how big of an effect did they have.

Another criticism I have seen is that the male:female ratio is quite high, 18:1, as opposed to the 3:1 or 4:1 found in most studies. They found 19 autistics. A 3:1 male:female ratio would lead us to expect 5 females. I’ll let the statisticians tell me if this is significant, but they did find fewer women than I would expect. The report notes repeatedly that the small number of women limits the analysis.

I have been told in the comments on this blog that the study was done cheaply. I wouldn’t be surprised. However, it does represent a significant effort. I am impressed that anyone undertook to do a prevalence study on adults.

This isn’t a definitive or end-all study. Far from it. But it is a reasonable study and a very good start. I hope this is the beginning of a much greater effort to gather more information on adult autistics. It is pretty frightening to think that a very large segment of the autistic population could be undiagnosed and possibly receiving inappropriate supports.

I am autism video removed from Autism Speaks’ website…or is it?

28 Sep

I am not fond of the Autism Speaks video, “I am Autism”. I think I’ve made that clear.

I was heartened to hear that Autism Speaks had removed it from their website. That moment was short lived.

Over at Whose Planet Is It Anyway?, abfh has noted that Autism Speaks has posted an email that has been sent out to a number of people who complained about the video:

Dear [name],

Thank you very much for sending me your letter and telling me about your perspective and feelings regarding the “I Am Autism” video. I understand and respect your perspective and I am truly sorry that the film offended you. The video was not intended to reflect Autism Speaks broader viewpoint or attitude toward persons with autism spectrum disorder. Rather, it was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. It is based on a personal poem written by Mr. Mann. It is an intensely personal expression by these two fathers. It was their hope that the piece would inspire other voices and artists in the autism community. It has greatly offended some people, however, and we have removed it from our website.

Again, thank you for writing to me and sharing your thoughts. You can rest assured that I will continue to advocate for a respectful and compassionate attitude and support for persons with autism spectrum disorder.

Sincerely,

Geri Dawson

But, as abfh notes, the video is still on the Autism Speaks website.

If you want further reading–here are the sites from the first page of a google search for “I am autism”.

Asperger Square 8

I Speak of Dreams


Protesting Autism Speaks “I am Autism” Video | Facebook

THE NEW REPUBLIC: I Am Autism Speaks

I am Autism Controversial Video Disability Videos

I Am Autism Speaks

There is a page witha blog post that has a similar sentiment to the Autism Speaks video, but that predates the Autism Speaks video by quite some time.

I Speak of Dreams has a running list of blog posts about this.

(note, some minor corrections were made after this was published)

John Stone/Polly Tommey claim oversight

26 Sep

The first official sounding of the death knell for the ‘hidden horde’ hypothesis of autism (it must be vaccines because there aren’t 1 in 160/150/100 adult autistics) was recently sounded (as reported by Anthony) when an NHS study announced that the rate of autism amongst adults was 1% – exactly the same as for kids.

Fully aware of the implications for their beloved anti-vaccine hypothesis John Stone and Polly Tommey write/star in a recent post on that repository of all things bullshitty – Age of Autism.

NHS Autism Report suggests the increase in autism in recent years was all down to an oversight

Says John Stone, trying to reassure his readership theres still life in the terminal old dog of the hidden horde hypothesis. And why does he say this?

“Are we really able to believe all that we hear on such important subjects, or is there a stronger hand with adifferent agenda behind it?”

Ahhhh, of course! When a piece of science/news story doesn’t support your point of view then it _must_ be the work of….oh, whoever – Illuminati? Out of control government? GAVI? Take your pick.

But surely Stone and Tommey have better reasons than that…? Don’t they?

Well no, not really. They didn’t like the perfectly valid Autism Diagnostic Observation Schedule that was used. Although they don’t refer to it by name, instead they cherry pick questions to try and demean the validity of the test.

The report was based on adults living in households throughout England and the assessments were done in two stages. Stage One asked individuals to rate how well they agreed with 20 statements about their likes, dislikes and abilities – such as whether they preferred going to ‘libraries’ or ‘parties’.

…If the full range of ability had been included in the NHS report, alongside the verbally fluent, high functioning adults living at home, there would surely be far more than 1 in 100. So, either there are more adults than children with an ASD and autism is on the decline(!?) or there is something wrong with the report.

A quick glance at many mainstream autism orgs claim on prevalence would show Stone that yes, there are more autistic adults than children. This report could indeed be interpreted to show a decline in autism.

People will claim that thats counter intuitive but it really isn’t. As autism has become more recognised, better diagnosed and there are more centers worldwide for its early detection, child numbers have not risen but have become more apparent. This is true across the whole ‘spectrum’.

Taking the NAS numbers on prevalence They say that at a rate of 1 in 100 children gives a total of around 133,500 kids with an ASD. This leaves 366,500 adults. A rate of 0.8%.

So the estimate prior to the new report was 0.2% out. But Stone was right, there are now (and always were) more ASD adults than kids. Thats because there are more adults in the general population than kids. In terms of whether the _rate_ of autism has decreased there’s no research to compare this to but an estimate of 0.8% is pretty damn close to 1%. In real terms the NAS were only out by 733 adults. So I would say that this report reflects reality – with no doubt regional variance and other factors, the adult rate is (and always was) around 1%.

But the stoopid continues apace:

One thing is clear, however, the report has no relevance to children withautism like my son Billy and the many thousands like him.

Quoth Polly Toomey who somehow missed the point that this was a study of adults and thus was never going to have much relevance to her children.

We’re then treated to the science of Carol ‘try me shithead‘ Stott who personally received over £100,000 of legal aid money to prop up the dead MMR hypothesis. She claims (after further digs at ADOS) that a ‘further detailed critique’ will be appearing in that robust science journal AutismFile….owned and operated by one Polly Tommey.

So there we have it. This new study, which whilst far from 100% perfect is also far from the dead dog portrayed by the purveyors of science at The Autism File and Age of Autism. They think theres a conspiracy to ‘big it up’ and refuse to see the statistical truth. ASD hasn’t ever been in epidemic, theres been a stable rate for a long time. These dealers in anti-vaccinationism will just have to deal with that.

Why I don’t like “I am autism”

25 Sep

When the Autism Speaks “I am autism” video came out, I really didn’t like it. It was on such a primal level that I couldn’t put words to how much or why I found it offensive.

One problem with leaving my reasoning unsaid is that many people reach the wrong conclusions. I have read here and elsewhere complaints that people like myself who criticize “I am autism” don’t understand that it is about the most challenged (low functioning) autistics.

I would say that anyone who thinks “I am autism” is about the challenges of autistics (“high functioning” or “low functioning”) didn’t pay close attention to the video.

Here it is again. (and here is a transcript)

Of course, some people understood where I was coming from. Fellow parent, Monica, wrote in the comments:

My voice isn’t the one that matters when it comes to autism. It really does take an idiot not to get that. I think a lot of my role as a parent is shutting up and listening. Until I am able to be quiet long enough that I can understand what they are wanting/needing I have no business being anyone’s voice. That’s a lesson that Autism Speaks obviously hasn’t learned.

It has been said that most stories have three main elements: a villain, a victim and a hero. “I am autism” certainly uses this three-pronged plot device. Let’s take a look:

The Villain: Autism

Autism Speaks very clearly has cast “autism” as the villain. Autism has no morality. Autism doesn’t know right or wrong. Autism wants to steal our children and our dreams.

Autism is some sort of science fiction monster or demon who stalks our children.

The victims: Parents

Watch the video and ask: Who is affected by autism? If all we had was the video to go by, the answer would be simple: Parents. Autism takes money away from…parents. Autism ruins the marriages of…parents. When a child has a meltdown in a public place, a park or temple or birthday party, it is the parents who are embarrassed. The death of a parent is important in the fact that the parent dies worrying about who will take care of their child or children.

The heroes: Parents

Yes, the parents are cast in two roles, victims and heroes. OK, not just parents. Grandparents, brothers and sisters are also heroes. Teachers, therapists, pediatricians and scientists get supporting roles as heroes as well. They are a community of warriors.

OK, that’s what I don’t like. If I were to make an appeal for funding (which is what I assume “I am autism” is for Autism Speaks), how would I frame it? What would I change?

First, autistics were given no voices in this video. It is all people speaking for autistics. Leaving autistics out is wrong on so many levels. Many, many levels. I could write the entire blog post on that one topic, and still have people pointing out things I missed.

Second, they still pose the discussion as primarily about children. There is at least one adult shown in the videos, but by far most of the video and voiceover is about children. Autism Speaks claims that there are 1.5 million autistics in the U.S. Perhaps it is time they acknowledged the 1.0 million adults and not just the half million children.

Third, I don’t like the victim device. No, I am not saying that autistics don’t face challenges, or that the challenges some face are very, very great. I am not in denial of that. I just don’t like victimizing the people you are purporting to help. It is paternalistic and it is counterproductive to many of the goals that are very important, like trying to help people live as independent a life as possible.

Which brings us to the fourth point:

Fourth, with apologies to my fellow parents, but the autistics really are the heroes. There are kids working harder in kindergarten than some people work in grad school. There are adults working harder just to get through the day than I do at work. If we are supposed to pity the parent who is embarrassed by their child in the park, how about some compassion for the child (or adult) undergoing the meltdown? We are supposed to feel the pain of the parent who wakes up crying wondering about “who will take care of my child after I die”. How about the autistic who will spend most of his/her life without a parent caregiver?

Who, really, is the hero? When will Autism Speaks get it that it is time to stop patting themselves on their own backs and start acknowledging the accomplishments of their children and the many autistics in the world. Autism Speaks could go a long way towards that by integrating their own organization with the very people they purport to represent: autistics. Get some autistics into Autism Speaks and start listening.

Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression

24 Sep

Autism, regression, mitochondrial disease and vaccines. With a combination like that, this paper is likely going to be very important.

Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression

Here is the abstract:

Autistic spectrum disorders encompass etiologically heterogeneous persons, with many genetic causes. A subgroup of these individuals has mitochondrial disease. Because a variety of metabolic disorders, including mitochondrial disease show regression with fever, a retrospective chart review was performed and identified 28 patients who met diagnostic criteria for autistic spectrum disorders and mitochondrial disease. Autistic regression occurred in 60.7% (17 of 28), a statistically significant increase over the general autistic spectrum disorder population (P < .0001). Of the 17 individuals with autistic regression, 70.6% (12 of 17) regressed with fever and 29.4% (5 of 17) regressed without identifiable linkage to fever or vaccinations. None showed regression with vaccination unless a febrile response was present. Although the study is small, a subgroup of patients with mitochondrial disease may be at risk of autistic regression with fever. Although recommended vaccinations schedules are appropriate in mitochondrial disease, fever management appears important for decreasing regression risk.

The authors note neurologic regression in general (not just autistic regression) is observed with patients who have metabolic diseases:

Patients with mitochondrial diseases, like many patients with metabolic diseases, are at increased risk of neurologic regression in conjunction with stressors such as fever, infection, and dehydration.

They studied 28 patients who met DSM-IV criteria for autism and diagnostic criteria for mitochondrial disease.

They define regression and whether it is related to fever thusly:

Autistic regression was defined as loss of developmental skills that included speech, receptive skills, eye contact, and social interests in individuals ❤ years of age. A relationship between fever and autistic regression is defined as regression beginning within 2 weeks of a febrile episode without the suggestion of infectious meningitis or encephalitis.

One comment–the definition of regression is somewhat vague to me. What is also critically important in this discussion is whether there were any signs of autism before the regression. Or, as some may put it, is this regression into autism or autistics undergoing regression? Is there a mix of pathways?

They state that 17 of the 28 patients studied underwent an autistic regression. This is higher than the roughly 25% value for autistic regression they assumed for the general autism population, and statistically significant.

In other words, they are saying that autistic regression may occur more often with kids with mitochondrial diseases.

They note that some of the fevers could be linked to vaccination:

The 17 individuals with autistic regression could be divided into 2 groups, those who regressed with fever (70.6%, 12 of 17) and those who regressed without identifiable linkage to fever or vaccinations (29.4%, 5 of 17).

And,

No individual showed regression with vaccination unless a febrile response was present.

They discuss the concerns with vaccination in the conclusion, noting that vaccination is still recommended for children with mitochondrial diseases. My experience in discussing this issue with mitochondrial disease experts is that they find vaccination to be extremely important. If, for some reason, they decide to not vaccinate a child with mitochondrial disease, they insure that all family members are vaccinated to protect the child.

Children with identified mitochondrial diseases are routinely managed carefully by their physicians with aggressive fever control and hydration. In this context, vaccination of children with mitochondrial diseases is recommended. In our experience, the vast majority of patients with mitochondrial diseases receives a full vaccination schedule according to American Academy of Pediatric guidelines without consequences, particularly when physicians are sensitive to fever control and hydration. In our patients with mitochondrial disease and autistic spectrum disorders, the vaccines did not appear related to the neurologic regression.

I will note again that I feel autistic regression as defined is too vague. Were the patients on the spectrum before the regression? Were they typically developing before the regression?

At least two children were noted to have multiple regressions (a sibling pair). That indicates that at least in some cases, regressions occurred in people already autistic. There just isn’t other information on this.

Another area I would like to see discussed further is on siblings:

Affected siblings were identified in 35.7% (10 of 28).

Affected how? Mitochondrial disease. But, are they also autistic? It would seem not since they included one sibling pair.

This is a big question to me. While the spotlight has been shown on the possibility of mitochondrial disorders being linked to autistic regression, the more general question is more important: could fevers induced by vaccination result in any regression (autistic or otherwise) in people with mitochondrial disorders.

Another question in my mind in this study. Are there patients who underwent regression from non-autistic to autistic) after age 3? According to the Johns Hopkins group, this doesn’t happen. According to them, there is an age window where the regressions could result in autism. This is a very important question in how these patients might fit in to the broader spectrum of autism.

Apply for Autism Research Grant

23 Sep

The Autism Science Foundation announce their first RFA:

The Autism Science Foundation invites applications for its Doctoral Training Award from graduate and medical students interested in pursuing careers in basic and clinical scientific research relevant to autism spectrum disorders.

The proposed training must be scientifically linked to autism and may be broadened to include training in a closely related area of scientific research. Autism Science Foundation will consider for training purposes all areas of related basic and clinical research including but not limited to: human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders), neurobiology (anatomy, development, neuro-imaging), pharmacology, neuropathology, human genetics/genomics, immunology, molecular and cellular mechanisms, and studies employing model organisms and systems.

Truth and Consequences – The Anti-Vaccination Movement Exacts a Price

23 Sep

“I feel like getting in my car, driving away and never coming back. I can’t stand it anymore. If the screaming, howling, humming, and screeching doesn’t stop I will lose my mind. 14 hours a day. From the second he open his eyes until the second he closes them there is noise. Even if you tell him to be quiet he sits there and says “be quiet…be quiet” over and over. Not more than 10 seconds goes by where some ridiculous sound isn’t coming out of my son. He talks in a high pitched screechy voice that makes every nerve ending stand on end. He screeches and screams for no reason. The humming, the high pitched humming all day long. I can’t take it. My head hurts so bad and there are only so many things I can take for a headache. I wake up at 7 am, or rather I am awakened by screeching at 7am and get no peace until about 9pm. By then my head hurts so much it doesn’t matter. I can’t get anything done because I can’t focus with the noise in the background. I can’t have a phone call. I can’t have a conversation in person. I know this is going to upset some people but I swear, I miss the days when he didn’t make a peep. not a single peep. I remember when I used to cry and ask him to talk to me, to say anything. I should have been more specific and wished he’d speak and make meaningful sentances rather than walk around all day and say meaningless phrases over and over, and scream and screech when he didn’t. know what meaningless phrase to use at the moment. I have about 40 minutes before he goes to bed then I get to listen to him hum himself to sleep for an hour. By then I should be ready to jump off a roof.

Thanks for letting me vent. Not sure if it made me feel better but at least if I jump off the roof someone knows why”

Posted by “Mary”, mother of “Saul”, age 7.9 (7 years, 9 months), to an autism “biomedical treatment” yahoo group in August 2009.

The idea that vaccines might be a cause of autism has received a great deal of attention from the media. Scientifically, the question has been thoroughly investigated and thoroughly discredited.

Legally, the idea has also been rejected. The Autism Omnibus case bundled the claims of almost 5000 children against the Vaccine Injury Compensation program. In the hearings for the first of three theories of causation, the lawyers for the parents and their children chose the strongest three cases to illustrate their claim that MMR vaccines and thimerosal-containing vaccines can combine to cause autism. On February 12, 2009, all three cases were dismissed. The decisions were scathing, stating that “the overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories.” Moreover, parents were characterized as a “loving, caring, and courageous” family “misled by physicians who are guilty of gross medical misjudgment. In June and July of 2009, all test cases were appealed, and all three were dismissed.

The yahoo group “Environment of Harm” formerly “Evidence of Harm”, was established to discuss the book of the latter title, written by journalist David Kirby. The focus of the group is to discuss

“issues of government public health negligence and corruption and the various political efforts by parents to end the spectrum of epidemics that is being revealed as mercury poisoning, especially autism.”

From March 2005, the date of the book’s publication, until February 2009, when the Omnibus legal decisions were rendered, the group received an average of over 2000 posts per month. Since the rulings, the posting rate has dropped to only 800 per month, perhaps indicating that the issue is also losing momentum from a political point of view.

The mainstream media, the groups such as the AAP, and the blog sphere have also pushed back in an effort to educate the public on the harm done by the vaccines cause autism groups.

But behind the scientific and legal consensus that vaccines do not cause autism lies a hidden world, the autism “biomedical” yahoo- and chat-group world. There is no decline in the number of posts in this world. It’s a thriving, and growing community, one that has fueled the popularity of the anti-vaxers, and the certainty of those parents who consider their child “vaccine-injured”. It has spurred the spending of millions of dollars on supplements, hyperbaric treatments, off-label prescription medications, and myriad other autism “biomedical treatments”. These “treatments” are almost all of no proven benefit, some are ridiculous, some relatively benign, and many potentially dangerous. This article will explore the journey of one mother, “Mary” in her efforts to cure her son “Saul”. While the case of Mary and Saul, documented in her own words is shocking and appalling, Mary is not alone nor is she an extreme case. She is one of thousands of parents seeking autism “biomedical treatments” on the internet.

We first meet Mary in October 2003, when her son Saul (born November 2001) was only 22 months of age. She began posting on the group NLT (for a description of the yahoo groups discussed in this article see the section at the end). She stated that her son

“is basically non verbal. He said his first word, duck, at 7 months old. About a month later he said light, off , and on, but dropped duck. This set a pattern for him. Anytime he learned a new word he dropped any old words he had used at that point. Now, his only real words are Mama and Dada. He will on a rare occassion say car. He has had and lost about 20 words since 7 months of age.”

Shortly thereafter, he was evaluated by early intervention, and psychologist wrote PDD on his evaluations, along with the term Autistic-like. Mary was told that he was not autistic, but he’s autistic like. 10-20 hours a week of intensive in home therapy (ABA) was recommended.

So, Saul is a very young child, showing speech delay and signs of autism, evaluated very quickly, and almost immediately started on early intervention. Of course, Mary is understandably upset:

“I don’t know why I’m so upset. He (the psychologist) didn’t say anything I didn’t already know or suspect. I guess its just because my fears were realized. Rather than come in and say “oh no, he’s fine, he’s just a late talker” I heard what I was hoping not too. I’m sure that somehow to some degree this is my fault. Saul was such a quiet content infant, and he was content to play by himself as he got older I sort of went with it. I figured he was happy let me go do dishes, or laundry or whatever and let him entertain himself. Yeah that was great but now he is only happy by himself and turns in to himself and its my fault I know it is.”

Recent research (two links:here and here) has looked at the impact of parental acceptance of their child’s autism diagnosis. It was found that parents who do not come to a resolution (i.e. come to terms with and accept the diagnosis and its implications) find raising their child more difficult. In the case of Mary, we will see a real-life example of a mother failing to come to terms with her child’s PDD.

Here’s Mary again:

Thank you everyone for your support. I’m sorry I forgot to mention Saul’s age. He will be 2 at the end of the month.

I’m feeling a lot better but still overwhelmed. I want to read as much as possible so I can do the best to help him but I think I need a little time to come to terms.

A few questions though if anyone knows…Do kids diagnosed with PDD always end up as special ed or is their hope with therapy he main go mainstream. The reason I ask is that my cousin teaches 5th grade special d and the majority of her kids are PDD kids, and have been in special ed since kindergarten. What are the odds that my child will grow up, go to college and lead what is considered a normal life?

Also, I was reading about a special diet that gluten free that is supposedly helpful. Has anyone tried this?

Should I just go with the system for say 6 mos or so and see how he responds and progresses before trying anything different like diet changes or supplements.

Sorry if I’m asking a million questions. My brain is spinning and all the websites I go to just overwhelm me more. Everyone here seems to have such a wealth of knowledge, and more importantly personal experience and understanding.”

This message signals the start of a frightening journey into the realms of woo. The “treatments” inflicted on Saul are very painful to read. Mary joined numerous autism “biomedical treatment” yahoo groups. She is presently a member of all the groups in the box, see below (except EoH), and more besides. She has posted more than 3500 messages to these groups. Mary reveals her willingness to accept medical advice from strangers on the internet, and her trust in doctors employing “gross medical misjudgment”. Between the ages of 3.6 and 7.9, Saul has been “treated” with the following (in alphabetical order):

Acetyl L Carnitine –
acetylated form of L-carnitine
(quaternary ammonium compound biosynthesized from the amino acids lysine and methionine)
Actos (pioglitazone)
-prescription drug which carries a black box warning
Cal/Mag Butyrate – mineral supplement
Candex
– marketed as an enzymatic remedy to treat the yeast infection candida
Carnosine -amino acid
Chelation – process of removing heavy metals
Andrew Cutler protocol (at least 50 rounds)
DAN protocol for 2 1/2 years.
15 IVs of EDTA & Glutathione
5 IVs of DMPS and glutathione
5 combined IVs DMPS/EDTA/Glutathione
Chiropractic
Diflucan – prescription anti-fungal
Dimethyl glycine – modified amino acid
Enhansa – Enhanced absorption curcumin supplement
Epsom salt baths
Essential fatty acids
Flagyl (Metronidazole) – prescription anti-fungal
Folinic acid – modified folic acid
Folapro – highly absorbable folate
Galantamine
prescription drug used for the treatment of mild to moderate
Alzheimer’s disease and various memory impairments
GFCF diet – gluten-free-casein-free diet (3 years)
GFCF diet with digestive enzymes for infractions
HBOT
hyperbaric oxygen treatment
(Mary owns her own Mary owns a Vitaeris 320)
HLC MindLinx Powder by Pharmax – probiotic
IM Bicillin – prescription intramuscularly injected form of penicillin
Inositol – a nutrient
IVIG – Intravenous Immunoglobulin
prescription
used to treat immune dysfunction
contains the pooled immunoglobulin G (IgG)
immunoglobulins from the plasma of approximately a
thousand or more blood donors
Klaire Labs Detoxification Support and Factor 4 – probiotic
Liquid Bodybio PC – phosphatidylcholine with essential fatty acids
Liquid grapefruit seed extract
Low dose Naltrexone – an anti-opiod
L-theanine – amino acid
Magnesium supplements
MB12 – Methylcobalamin, vitamin B12 – shots
MB12 – Methylcobalamin, vitamin B12 – spray
Nicotine patch
Nizoral – antifungal
Nystatin – antifungal
OLE – olive leaf extract
OSR
(N,N’-bis (2-mercaptoethyl)isophthalamide,
also know as 1,3-benzenediamidoethanethiol)
an untested synthetic chemical
Oxytocin nasal spray
PCA-Rx – purports to remove toxins from the body
Phosphatidylcholine
Pro Bio – probiotic
Quercetin – antioxidant flavinoid
Reduced glutathione cream
Threelac -probiotic
Transdermal NAC (N-Acetyl Cysteine)
Valtrex (valacyclovir)
used to treat infections caused by herpes viruses
Vitamin C
Vitamin E
Zithromax – antibiotic

Mary has been tireless in “treating” Saul. But what about Saul? One would think that he must be very impacted by autism in order for her to go to these extraordinary lengths to cure him. Actually, no. He’s an extraordinary kid, and a wonderful one. Saul could identify all of the letters in any order and count to 40 at age 2.2. He started sight reading words at about 2.3 and at age 2.8 could sight read about 30 words. He started kindergarten in a segregated setting at age 4.9, , talked to the teacher, “he sat nicely through circle time, sat at his desk during class, and even raised his hand and answered questions. He was pointing to shapes on the wall and quizzing the teachers!” Here is Mary’s description of Saul at age 4.7:

“I woke up this morning and he was in bed with me. I’m not sure what time he came in because I never heard or felt him get into bed which is unusual. I woke up and felt him there. I rolled over and his little face was right there. He looked so peaceful and really has the face of an angel. I just laid there and stared at him for about 20 minutes. He yawned and opened his eyes. He saw me and his face lit up with a HUGE ear to ear grin. “Good morning Mom. Love you. Gimme a hug.” He gave me such a big strong hug. “Gimme a kiss.” I gave him a kiss. A second later his gears kicked in and he was off and running on full speed. After a few minutes he came back in the room and said “GIMME BREAKFAST! ! !””

But the “biomedical treatments” have not always been kind to Saul. Here’s Mary describing him at age 5.11

My son is on a ton of supplements. We haven’t really changed anything. Starting August 30, for three weeks we had to stop all enzymes, antifungals and probiotics in preparation for a endoscopy/colonoscopy. He is back on everything since he was scoped on Sept 20. Also at the beginning of August he had a high fever and a nasty rash that was diagnosed as Fifth’s Disease. I’m not convinced it was Fifths. He didn’t have the bright red cheeks and the rash was gone in 3 days.

After being sick he became clingy and a little whiny. In the past month its become horrible. I can’t even stand up without his whining “mommy..moooommmmmy, mommy will come.” I hear this the entire time I’m out of the room. Even if I tell him what I’m going to do and that I’ll be right back he continues saying it over and over. He whines over every little thing. Usually just lets out a big “WWWAAAAHHH” and it goes on and on. He cries over everything. He’s driving me insane. We are also seeing a decrease in spontaneous expressive language, asking repetitive questions, and repeating back questions instead of answering them.”

Nor have the “biomedical treatments” been kind to the family budget. In one message, Mary admitted that each month she spent $2800 – $3500 for IVIG, plus about $500 in supplements including the cost of chelation.

In a rare moment of insight, in May 2008, Mary posted:

“Sometimes I feel like a mad scientist and my poor kid is my guinea pig.”

Finally, a year later, she posted the preamble to this article (see box at top). How’s that “biomedical treatment” working out for you, Mary?

Such are the real costs of the anti-vaccination movement, the “biomedical treatment” internet groups. And the real costs of a parent unable to accept their child’s diagnosis. In her last message to the NLT group, Mary is still in denial about her son’s diagnosis:

RE: Sowell Traits
My son is 5 and is diagnosed PDD-NOS fits 7 of these to a T! ! ! The only one that doesn’t fit is # 7

Makes me wonder what we are really dealing with.”

Thousands of parents are members of these yahoo groups. Once inside the cozy echo chamber of the group, there is general acceptance that vaccines cause autism. Members expressing opposing views are drummed out of the group. It is taken as an article of faith that there are children recovering from autism by the use of these biomedical interventions. The parents get poorer, the quacks get richer, and the innocent children are the victims of often dangerous and painful experimentation at the hands of the people who are supposed to care for them the most.

Some Yahoogroups

A-M – Autism-Mercury. Membership 8400, 2000 messages/month (archives public)

“To discuss current issues related to the increasing incidence of autism the potential link between excessive mercury exposure via thimerosal in infant vaccines. Topics include: mercury detoxification (“chelation”), mercury-related issues/news, and vaccination-related issues/news. Most members are parents of children with autism, aspergers, ADD, ADHD, PDD, PDD-NOS, SID, oppositional defiance disorder, apraxia, speech disorders, and/or other related symptoms. There are many labels: you are welcome regardless of particular label(s). In addition to mercury, we also discuss other heavy metals (for example: arsenic, antimony, lead). Many parents here are in the process of chelation, with a child. This process is discussed in detail. Also welcome: mercury poisoned adults; other disorders/issues related to mercury poisoning; other biomedical treatments for ASD.”

Comment: Primarily discusses Andrew Cutler heavy metal chelation protocol. This protocol relies on faux “counting rules” applied to hair testing to purportedly prove that people are “mercury toxic”. Andrew Cutler has a PhD in Chemical Engineering.

CK2 – Chelatingkids2. Membership 6600, 3000 messages/month

“This list is for parents and/or family members of children with autism who are seeking biomedical intervention, The main focus of treatment here follows the DAN! or Defeat Autism Now.”

Comment: Mercury chelation according to the DAN! protocol. This protocol relies on provoked urine tests to purportedly prove “mecury toxcicity”. This very active group has been recently closed to new postings for an unspecified period of time.

EoH – Environment of Harmformerly Evidence of Harm. Membership 2300, 600 messages/month (archives public)

“This is the Environment of Harm discussion list focusing on vaccine damage and mercury poisoning as it relates to autism. Of keen interest to participants are the issues of government public health negligence and corruption and the various political efforts by parents to end the spectrum of epidemics that is being revealed as mercury poisoning, especially autism.”

Comment: Politically active group originally supporting the autism is caused by mercury poisoning hypothesis, but now openly anti-vaccine.

GFCFKids– Membership 14000, 3500 posts/month

“The principle aim of this list is to provide a discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children’s diets. We hope that the discussions will include practical information and tips on following a GFCF(etc) diet; scientific research and opinion; the latest developments in understanding GFCF(etc) diet-related health problems; your personal stories and experiences with relation to GFCF(etc) problems; information on what food is GFCF(etc)and what is not; tips on how to eat out of the house; recipes and tips on how to cook and prepare GFCF(etc) food; what vitamins, minerals, herbs and other supplements may be appropriate for a child with autism, how to cope with difficult diet demands, plus support for parents.”

Comment: One of the largest “biomedical treatment” yahoo groups. While the GFCF diet has substantial anecdotal support, clinical trials have not shown any benefit. The GFCF diet appears relatively harmless, however, it can result in weakening of bones due to nutritional deficiencies. Moreover, it often acts as a first step on the path to more dangerous “biomedical treatments”.

NLT – NaturalLateTalkers. Membership 2900, 500 messages/month

“This list is a support for parents of latetalkers or speech delay with some or all traits of latetalker listed in the book Late Talking Children by Thomas Sowell. . . Here parents ARE and will be able to discuss their problems, concerns, and dissatisfaction with the over diagnosing done by various systems, such as speech therapists, doctors, schools, etc. Parent’s choice helping with speech through parent or another source is to be respected.” (sic)

Comment: This list supports those in deep denial about their child’s autism. While such support groups appear to be relatively benign, offering mutual support to parents of children with disabilities, they are often an entry point for parents to learn about the autism “biomedical treatment” and anti-vaccination movements. These groups are replete with examples of parents taking medical advice from strangers over the internet, many of whom are accorded more credibility than the medical professionals who have actually seen their children.

The Autism Speaks bait and switch with I am Autism

23 Sep

Autism Speaks’ recently debuted their new “I am Autism” video.

Here is Suzanne Wright’s appeal for parents to donate video footage for this event:

“We will all help shine a bright spotlight on autism.”

I find the final video to be far from “shining a bright light on autism”.

I am so glad I didn’t trust Autism Speaks with video of my child.

Autism Speaks media campaign…I am autism

23 Sep

Shades of the disasterous NYU Ransom notes campaign:

They make autism into a being with a voice who says:

“…and with every voice I take away, I acquire yet another language”

“…and if you are happily married, I will make sure that your marriage fails”

“…your money will fall into my hands and I will bankrupt you for my own self gain”

“…I will make it virtually impossible for your family to attend a temple, birthday party, a public park without a struggle, without embarrassment, without pain”

Not convinced it is like the ransom notes campaign?

“…I will plot to rob you of your children and your dreams.”

The rest of video is scripted from the perspective of parents, family, friends….pretty much everyone except for autistics, with phrases like:

“When you came for my child you forgot. You came for me.”

I am totally speechless aside from one word for Autism Speaks: why?

edited to add: here is the Autism Speaks announcement.

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