Archive | March, 2009

Andrew Zimmerman Finally Speaks

24 Mar

A year ago I tried to talk to Andrew Zimmerman about the Hannah Poling case and was told:

Dr. Zimmerman…….is not able to publicly discuss this patient. As a participant in this case, the family provided consent for Dr. Zimmerman to share information with the court, but we do not have parental consent to discuss the patient publicly – as we are bound by HIPAA privacy regulations, as in any healthcare setting in the U.S.

And in the year that has followed the Polings have not allowed Zimmerman to publicly comment once. Now I’m beginning to understand why.

Sullivan told me that yesterday the Expert Witness reports for the Respondents were made public and that Zimmermans was eyebrow raising to say the least.

Furthermore, there is no evidence of an association between autism andthe alleged reaction to MMR a nd Hg, and it is more likely than not, that there is a genetic basis for autism in this child.”

“Michelle Cedillo’s developmental regression was likely to have been
preprogrammed before birth to emerge, as it does in Rett syndrome, long after birth.”

“Autism, in most cases, begins before birth, and the maternal
“environment” in the womb is likely to be important in the process.”

“there is no scientific basis for a connection between measles, mumps and rubella (MMR) vaccine or mercury (Hg) intoxication and autism.”

“Autism is primarily a genetically determined disorder.” There is a
hypothetical basis, but very limited evidence, for environmental factors
(such as stress or the drug terbutalinel l) that may act together with
an individual’s genetic susceptibility to increase the risk of autism.
There is strong evidence that the origins of autism begin before birth,
based on genetic and anatomical studies as well as chemical findings at birth in children who go on to develop autism. The usual time
period when autism appears and is diagnosed during the 2nd and 3′” years of life reflects the dynamic nature of the child’s developing brain and the appearance of pre-programmed disordered expression of genes and preexisting cellular abnormalities that result in the child’s regression with loss of language and social skills.”

Recall once more that this is the man – along with Jon Poling himself and along with John Shoffner (who also doesn’t think much of Polings beliefs) who co-authored the only piece of science performed on Hannah Poling.

No wonder the Poling’s were so keen to keep Zimmerman quiet.

Thanks to Sullivan for some of this.

Stop the hate speech: r-word dot org

21 Mar

The Special Olympics have started a media campaign, including a website, to help eliminate the “r-word” (retard) from common speech.

I couldn’t say it better than they do on their website:

Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual disabilities, their families and friends. This word is just as cruel and offensive as any other slur.

r-word.org

I am very glad to see the Autistic Self Advocacy Network (ASAN) as one of the supporting organizations for this campaign.

In the last couple of years, there have been a few very prominent uses of the “r-word” in the media. I found it very unfortunate that many in the autism community argued, “our kids aren’t retarded” rather than calling it out as the hate-speech it is.

This campaign appears to be getting a lot of publicity due to a misstep by President Obama on the Tonight Show. From the CNN story:

He told Leno that he bowled 129 in the White House bowling alley and said his bowling skills are “like Special Olympics or something.”

Mr. Obama moved quickly to apologize,

The comment during the taping of the show prompted Obama to pick up the phone on Air Force One and call Special Olympics Chairman Timothy Shriver to preemptively apologize for the remark before it hit television screens. He also reportedly invited Special Olympic athletes to Pennsylvania Avenue to hit the lanes and give him tips or shoot some hoops.

The president “expressed his heartfelt and sincere commitment to work with our athletes and make this country a more accepting place for people with special needs,” Lum, the organization’s president, said.

Thank you, Mr. Obama.

I would really like to find a bigger version of the print-ad used for the r-word campaign.  Here is the small version on the CNN website.  It says it pretty darned well.

Autism, HBOT, and the new study by Rossignol et al.

21 Mar

I recently read the BMC Pediatrics article, “Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial”1. I know this paper is attracting a lot of attention in the media, and it is certainly being ballyhooed about the internet. Hell, I’ve even received e-mail spam about this study! But I’m sorry to say, I don’t really share the excitement. In fact, I see what looks like a pretty significant error in the methodology of this study. It’s one of those types of potential errors that stand out like a strobe light or a siren – it’s really tough for me to pretend it’s not there.

Once again, I’m going to ask readers to set aside, for the moment, anything they may know about the role of hemoglobin in oxygen transport and how the minute increases (probably around 3-4%) in total blood oxygen content afforded by this kind of hyperbaric therapy, or simple O2 therapy for that matter, are probably pretty likely to be insignificant.

Both the paper and ClinicalTrials.gov2 list the Center for Autism Research and Education, Phoenix, Arizona, as a study location. This is a problem, because the stated treatment pressure in the study (1.3ATM) seems highly unlikely to actually be achievable in Phoenix with the equipment that was apparently used for this study.

As described in the section titled, “Interventions”:

“These procedures included covering control switches, inflating and deflating the chambers to simulate pressure changes, and masking the sounds from the chambers.”

The use of inflatable monoplace hyperbaric chambers, is a clear indication that the actual total pressures (and quite likely results of this study) would have been affected by the ambient air pressures at the times and locations of treatment. In fact, the ambient air pressure is the largest component of the stated treatment pressure in this study (ambient pressure + added treatment pressure = total treatment pressure).

Ambient pressure

Local atmospheric pressure is typically reported as sea-level pressure3 for its utility to aviation, and the meaningful interpretation of weather maps, etc., but the actual station pressure is affected by the elevation. The expected ambient atmospheric pressure, corrected for altitude, (or station pressure) in Phoenix, Arizona4 is 28.69 in Hg (where there is a modest elevation of 1161’ AMSL). Wanting to give this paper the benefit of the doubt, and knowing that “high pressure” weather is typical of the Phoenix climate, I looked at 30-day data5 for actual station pressure in Phoenix at a station of slightly lower altitude than the Center for Autism Research and Education. The 30-day mean station pressure is 28.81 in Hg, so I’ll use that one for calculations, as it will yield results more likely to be in the study’s favor.

Added treatment pressure

The actual operating pressure of the inflatable chambers, as stated by the manufacturer, is 4 PSI. 6,7 This pressure is also indicated on the Center for Autism Research and Education’s website:

“The chambers used at care utilize a pressure of 4 psi.”8

Total treatment pressure

The total treatment pressure can be easily calculated with the following conversions:
in Hg * 0.491 = PSI
PSI + PSIG = Total PSI
Total PSI * .068 = ATA

For Phoenix, Arizona, this gives a calculated total treatment pressure of 1.23 ATA.

28.81 * 0.491 = 14.15 PSI
14.15 PSI + 4 PSIG = 18.15 PSI
18.15 PSI * .068 = 1.23 ATA

Damn, that’s a pretty big difference from the paper’s stated 1.3 ATM – representing an addition of only .23 ATM (instead of .30 ATM) above mean sea-level pressure of 1 ATM.

I’ve corresponded with the lead author of this study in the past, and he stated that he observes gauge pressure of 4.15 PSI. Despite the manufacturer specs, the FDA-cleared medical device premarket notification, and the Center for Autism Research and Education’s website (which all indicate operating pressure of 4 PSI), and wanting to give the benefit of the doubt, I’ll use 4.15 PSI for the next calculation, as it will be more likely to yield results in the study’s favor.

28.81 * 0.491 = 14.15 PSI
14.15 PSI + 4.15 PSIG = 18.30 PSI
18.30 PSI * .068 = 1.24 ATA

It could be argued that treatment pressure for the other study locations were properly rounded up to 1.3 ATM (even though the actual pressures were quite likely to be considerably lower), however, even with all the calculations purposely leaned in favor of a higher number for Phoenix, Arizona, the study’s stated treatment pressure, there, should have properly rounded to 1.2 ATA! This suggests an overstatement of the added treatment pressure for the Phoenix location of 50% (.3 ATM is 150% of .2 ATM). Even if given the benefit of the doubt yet again, and an exception to proper rounding were made for solely for the Phoenix location in this study, the study’s likely overstatement in added treatment pressure for Phoenix is still a full 25%. (.3 ATM is 125% of .24 ATM – 25% more added pressure above 1 ATM was claimed in this paper, than was probably delivered).

I think this is a big enough boo-boo, that the editors of BMC Pediatrics should call for detailed errata. In the interest of scientific accuracy, it would seem prudent for BMC Pediatrics to:

1. Clarify for its readership and the scientific community, that the stated pressure of 1.3 ATM in this study is rounded up, and includes the ambient air pressure, or alternatively, state the estimated pressure in terms of ATA.

2. Clarify for its readership and the scientific community, that the stated pressure of 1.3 ATM in this study is an estimated pressure, since no actual measurements of ambient station pressure for the locations, and dates/times of treatments were reported.

3. Note for its readership and the scientific community, that the stated pressure of 1.3 ATM was not likely to be uniformly achievable across all study locations due to the use of inflatable hyperbaric chambers and changes in elevation (and atmospheric pressure) across study locations, potentially confounding the results of this study.

4. Note for its readership and the scientific community, that estimated pressures in the placebo control group are affected by these same issues that affect the treatment group, potentially confounding the results of this study further.

What do you think?

1 BMC Pediatrics 2009, 9:21doi:10.1186/1471-2431-9-21
http://www.biomedcentral.com/1471-2431/9/21/abstract

2 http://clinicaltrials.gov/ct2/show/NCT00335790

3Federal Meteorological Handbook No. 1 – Table 11-2
http://www.nws.noaa.gov/oso/oso1/oso12/fmh1/fmh1ch11.htm

4 LAT/LON 33.5º N 118.08º W

5 http://www.wrh.noaa.gov/mesowest/getobext.php?wfo=psr&sid=KPHX&num=720

6 Medical device pre-market notification (FDA-cleared)

Click to access K001409.pdf

7 Manufacturer product sheet

Click to access vitaeris-lowres2007-8.pdf

8 http://www.center4autism.org/therapyHBOT.asp

Study: Adults with Autism…

19 Mar

…can live fulfilling lives. Or, so say researchers in Utah, according to a recent news story. (study abstract here)

The news story is basically an echo of one that came out last Fall. Kev blogged it then.

I thought it worth blogging again, though. Not because of the good-outcomes nature (although that is a good thing to hear). But, as one of the researchers put it:

Adults with autism haven’t received the attention from researchers that children have…

It is beyond good to see research on adults with autism. It is vital. Even if you are in the “most people with autism are children” camp, learning from today’s adults just plain makes sense.

The adults studied were part of a joint UCLA/University of Utah study in the 1980’s. In this followup, the researchers interviewed people who had IQ’s > 70 in the 1989 study. As Kev noted in his blog post, these are not people with PDD-NOS or Asperger’s, they met DSM-III criteria for autism.

The authors found about half of the study subjects had “very good” or “good” or “fair” outcomes:

By these measures, the researchers found that 24 percent of the participants had a very good social outcome; 24 percent had a good outcome; 34 percent had a fair outcome; and 17 percent were rated in the poor social outcome category. No one’s social outcome fell into the very poor category.

Some of the details include:

About half of the 41 study participants were employed in full- or part-time competitive jobs. Six were living independently, including three who owned homes. Three were married with children, and one person also was newly engaged to be married. Eleven of the participants have driver licenses and the same number had a higher IQ than when assessed 20 years earlier.

IQ was not the main predictor of good outcomes. Instead, independent living skills were key.

The most important factor in whether study participants had a better living outcome was their degree of independence in daily activities—being able to take care of themselves, hold employment, live on their own or at least semi-independently, and take part in meaningful social relationships, according to Farley. Although IQ significantly influences social outcome, daily independence plays an even greater role in determining how well people with autism function, the researchers said.

To me, this seems to be somewhat circular reasoning: if the people are more independent, they have better outcomes. I need to read the actual study and see how they measure outcomes.

It is worth noting that “can live fulfilling lives” is not the same as “will live fulfilling lives”. A large fraction of the adults had “poor” outcomes. Also, we would all like to see fewer people even with “fair” outcomes.

About half the participants could not live or work independently, and the majority lived with their parents, although many of them had a high level of independence in their daily activities. Social isolation is a serious problem as well—44 percent of the group has never dated. In addition, 60 percent of the study participants, even some of those who had achieved independent living and working, were prone to anxiety and mood disorders and worried about a social stigma attached to autism. The IQ of eight participants declined since they first were evaluated 20 years ago.

One question I would have about the study is whether there is any bias in the selection of the study subjects. Out of 241 subjects in the original 1989 study, only 41 were reported on in this recent study. How they were selected for the followup could make a big difference.

Also, I will add that some will characterize this as “Look, another post saying we don’t need to offer any treatment for people with autism”. All I can say is, those of you saying that either have major reading comprehension problems or you have an agenda.

The big question in my mind is to find out what differentiated those who had good outcomes. One suggestion made by recent news sources–the support system of the Latter Day Saints (Mormon) religion/culture which predominates in Utah. According to one story:

And the LDS Church community may play a role in their success, researchers suggest.

“We wouldn’t be surprised if a lot of what contributed to those folks’ better outcomes is the unique social structures in Utah,” said Megan Farley, research associate at the Utah Autism Research Program and lead author of the study, published online Wednesday in Autism Research journal.

“While kids are still made fun of here and they face stigma … there’s this really strong network of multi generational support that are able to foster these kids’ development,” she said.

My first reaction was to brush this off as self-congratulatory. But, they aren’t saying it is the religion. Instead, it is the social structure.

Perhaps the most intriguing statement in the above news story was given a very short comment:

All but six of the adults in the study were still considered autistic.

Wow. 6 out of 41 no longer have autism diagnoses? I really need to get this paper and see if they have PDD-NOS or AS diagnoses. But, consider a 15% “recovery” rate. Begs a lot of questions. As Kev noted in his blog post, it seems unlikely that any of these individuals received biomedical interventions. For that matter, few if any may have received ABA.

Autism and Murder

18 Mar

Two stories recently made a splash in the autism community. In the first:

An 18-year-old man described as “severely autistic” is in custody on suspicion he murdered a 59-year-old Coos County woman…

and in the second:

A judge has ruled that Asperger’s syndrome cannot be used by the defense in the case of a man accused or murdering a woman after he lured her to his home in Savage in October 2007.

Three blogs carried this story, each revealing their owners particular viewpoints. In his small circulation blog, Harold Doherty said:

In recent days and weeks two severely autistic young men have been implicated in homicides. In one case, a young man with autism has been implicated in the death of his mother who publicly professed her deep love for her son and the joy that he brought to her….Neurodiversity ideologues are unlikely to change. Their views are entrenched and tied to their own public careers as professional “autistics” or “enlightened” autism parents. The truth is that they discourage society from addressing the harsher realities of autism by effective therapy, treatment or cure. They help keep members of the public from understanding the full nature of autism, particularly as it affects the most severely autistic. Theirs is a movement whose aim is to keep everyone from facing autism reality. Theirs is a movement which wants society to keep our heads in the sand and ignore autism reality.

And on their advert covered anti vaccination site, Age of Autism said:

How many stories of violent deaths allegedly at the hands of autistic teen males will we have to read before the world either A) embraces treatment for autism as a medical ailment or B) paints all autistic males as dangerous killers and locks them away a la 1955?

So you can see that Harold uses these deaths to say how silly neurodiversity is and AoA use them to say that treatment for autism is the only valid option before society is overrun with autistic killers.

Both viewpoints are pretty ridiculous. Harold builds up the idea that members of neurodiversity don’t like to talk about the bad things autism can bring. This is patently untrue as just a fairly random peruse around Autism Hub blogs would reveal. In fact, what neurodiversity bloggers tend to talk about are the good things and the bad. A quick example from Niksmom for example. The thing is that for parents on the Autism Hub who talk openly about their kids, they easily mix the good and the bad. Amanda Baggs, an autistic person, talks about some of the bad things that can happen to autistic people often. What Harold finds offensive is that we talk about the good things *at all* . I have no idea why.

And of course, on AoA they are desperate to link everything together with treatment. To make sure that *every aspect* of autism is seen as medical and to encourage biomedical treatment of those issues. A simple look at the advert-riddled blog that they have become is evidence of that. NB – I’m not knocking ads on websites at all but six image and text ads and five ‘sponsors’ is a little bit too much.

But then the third blog I’m talking about is Lisa Jo Rudy’s where she asks carefully and thoughtfully about how we can make sure that autism is _accurately_ reported on and presented to the world?

How can we battle the anxiety felt around the “autism spectrum” diagnosis? How can we present the face of autism accurately, without raising the specter of violence? What are your thoughts on this thorny issue?

Note the lack of appeal to fear (cure ’em or they’ll kill us!!) or appeal to fallacy (the evil ND’s are brainwashing the world!!) that AoA and Harold feel compelled to perpetuate. In fact the only quibble I’d have with Lisa Jo’s piece is the emphasis she places solely on children. However as someone writing from the POV of a parent maybe this is understandable.

In my opinion, the answer to Lisa Jo’s question – how do we get accurate information out about autism? – can be answered in some part by science.

I found it quite difficult to get ahold of papers about autism and death attributed to an autistic person. But the few that I did get access to point to quite a different direction than the overly bleak and purposefully twisted futures foreseen by Harold Doherty and AoA.

In this study, the authors looked at rates of criminality amongst those with a Pervasive Developmental Disability (subgrouped to ‘childhood autism’, atypical autism and AS) . In the childhood autism group (which corresponds to severe/kanners/etc) 0.9% had a conviction as adults. In the control group, the rate was 18.9%. For atypical autism the conviction rate was 8.1%. The control group was 14.7%. For AS, the rate was 18.4% and the control group was 19.6%.

So, in each subgroup of PDD the authors looked at, the rate of criminal conviction was lower than controls. For the type of autism that Doherty and AoA are talking about less than 1% had a conviction compared to 18.9%. I think its clear that if this paper is accurate then we’re hardly going to be overrun with autistic killers.

In the other paper I couldnt get ahold of to read in its entirety, the authors looked at wether moral judgement was present in autism. Its worth noting the assumption that ‘theory of mind’ is somewhat accurate by these authors but still,:

Cry baby scenarios, in which the distress of the victim is “unreasonable” or “unjustified,” do not elicit moral condemnation from normally developing preschoolers or from children with autism. Judgments of moral transgressions in which the victim displays distress are therefore not likely the result of a simple automatic reaction to distress and more likely involve moral reasoning…

Therefore,

…basic moral judgment [is] substantially intact in children with autism who are severely impaired in ‘theory of mind’.

Or in other words, severely autistic people demonstrably know the difference between right and wrong.

The third paper that I did get ahold of in its entirety was a very disturbing case study about an autistic 10 year old girl who killed her baby sister. After reading it and the heap of physical and mental abuses placed upon the autistic child, including the parents letting neighbours beat her and the parents withdrawing her seizure medications I felt this case was too extreme to be valid.

The feeling I get is that these tragic cases of severely autistic people seriously harming others are rarer than rare. Certainly the observation that severely autistic people clearly are aware of right and wrong and that the follow up observation that severely autistic (and atypically autistic) people had an extremely low conviction rate compared to controls shows that I think its very wrong to paint autistic people as requiring a cure before they kill us all or are forcibly locked away. It is also wrong to suggest that the ability to find happiness in a life with autism is somehow not realistic because autistic people kill others. Its a real shame that Doherty and AoA – all parents of autistic people – have so little respect for the sort of people their children may turn out to be.

Anti-vaxxers rejoice! You got another one!

14 Mar

DANA Elizabeth McCaffery died at 4 weeks of age from Whooping cough, a totally vaccine preventable disease. She was the first to die from this appalling disease since 1997.

Local Paediatrician Chris Ingall said:

“The only way to stop babies getting infected with whooping cough is by vaccination, there is no other way,”he said.

“The vaccination rates on the North Coast are the worst in Australia. This is why we have so many incidences in this area compared with other parts of Australia.

“Parents should be alarmed, whooping cough kills little babies. We must get our vaccination rates up so adults don’t pass the disease on to babies.”

The local health authority acted responsibly by bringing forward the vaccine schedule – a move that many anti-vaxxers will be horrified at no doubt.

Meanwhile, over in Kittitas Secondary School in the United States, the local health authority:

…is requiring postponement of all field trips and scheduled activities or events that include other schools, school districts, and/or family members of students.

Why? Because of Whooping cough.

As of Thursday, March 12th, there have been 24 cases of Whooping Cough in Kittitas County; 21 of these cases have been Kittitas Secondary School students or staff members.

In addition to those who tested positive over 150 Kittitas County residents have been tested for Whooping Cough since the beginning of this outbreak…

And still more elsewhere in the US:

Two elementary school students in the Stevens Point School District are recovering from whooping cough…

and yet more in the US:

The warning comes after two students in the district have been diagnosed with the potentially fatal bacterial infection. The health department would only say they are elementary aged students and were being treated.

How terribly sad and tragic that the same situation is playing out across so much of the affluent world – kids dying of vaccine preventable disease – because a few idiots think they know best and are willing to put the lives of others children at risk, when in the third world countries people are still dying by the tens of thousands from vaccine preventable disease and are desperate to get ahold of vaccines.

Once more I’m shamed by the actions of those in the so-called autism community who perpetuate this ridiculous nonsense at the cost of the very lives of babies.

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Poling turns his back on genetics

13 Mar

It’s been a year since the concession in the Hannah Poling case was made public. I’ve been thinking that we would likely see some discussion on it again–especially since the Bailey Banks case didn’t turn into the media event that the autism-is-caused-by-vaccines groups would have liked.

OK, I’m not that good at predicting events, but I was thinking after a year it is time to write a couple of posts about some issues from the Hannah Poling case for a couple of weeks. So, I wasn’t totally surprised when Dr. Jon Poling came out with an op-ed piece in the Atlanta Journal Constitution, “Blinders won’t reduce autism”.

When I read this last night, I thought “why blog this?” But, one line in there bugged me–it’s a common misconception but one that a doctor, heck a neurologist, should never make: the idea that genetic conditions aren’t treatable.

Here’s the quote:

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention

Wow. I guess we should tell Dr. Randi Hagerman at the UC Davis MIND Institute and everyone else working on fragile-X (a genetic condition that is on the verge of demonstrating valuable interventions) to stop their work?

And, why is it that people who claim to support “gene-environment” interactions seem to have disdain for the “gene” part? How are we supposed to separate the various autism subgroups without identifying the genes? And, if we identify genes, won’t their function give us some idea of what environmental causes might be worth studying?

OK… I’ve got that out of my system….

As long as we are here, we might as well look at some other fallacies. A good place to start is the Autism Street blog, who covered the poling op-ed. It’s well worth the read, as he covers some things I won’t.

One thing we do both cover–this statement by Dr. Poling:

Public school systems are drowning in the red ink of educating increasing numbers of special-needs students.

Autism Street has a nice graph (again, I encourage you to take a look), but here I’ll just point out that this assertion by Dr. Poling about the increasing numbers of special education students is just plain false. The percentage of the student population in Special Education has remained remarkably constant over the past 10 years or so. The cost of some of the autism therapies (ABA in particular) has likely driven costs up, but that isn’t what Dr. Poling said.

The main reason I was going to avoid discussing Dr. Poling’s Op-Ed is the fact that is is rather poorly disguised attempt to air his ongoing battle with Dr. Paul Offit.

Dr. Poling writes discusses how Dr. Andrew Zimmerman is a hero to the cause because of a recent book he edited. He then makes Dr. Offit the villain for Autism’s False Prophets:

On the other hand, Dr. Paul Offit, the vaccine inventor whose Rotateq royalty interests recently sold for a reported $182 million, has written a novel of perceived good and evil called “Autism’s False Prophets.”

Frankly, I think Dr. Poling should have listened to that little voice in his head (which I hope was there) saying, “Don’t take the cheap shots”. By which, I think that describing Dr. Offit’s book as a novel was rather silly and just points out that this is a personal attack by Dr. Poling. It doesn’t add, it just detracts.

If you think calling that a personal attack is a stretch, here’s a bit of telling imagery:

In the story, Offit takes no prisoners, smearing characters in the vaccine-autism controversy as effortlessly as a rich cream cheese.

Actually, I thought that Dr. Offit gave people like Andrew Wakefield a lot of respect, considering the low quality of their research and their public actions.

I was struck by the “cream cheese” allusion. Anyone recall this?

Paul Offit is the Philadelphia cream cheese of the autism debate — he smears so effortlessly

–Dan Olmsted, September 13, 2008

It stuck in my mind because it was so bad. Seriously, I had some people outside of the autism world read that bit by Dan Olmsted and asked them what they thought Dan Olmsted was trying to say. The readers didn’t come away with Mr. Olmsted’s message (that Dr. Offit smears others easily). Instead, they came away thinking Dan Olmsted was saying that it was easy to smear Paul Offit! S

My guess is that Mr. Olmsted wasn’t writing for anyone other than the Age of Autism regulars who would overlook his clumsy writing for a chance to poke fun at Dr. Offit, so he probably isn’t bothered.

I guess Dr. Poling thought it was a good analogy.

But, back to my own clumsy writing. Dr, Poling makes this statement:

As both parent and doctor, I cannot fathom turning my back on a child nor science, in order to avoid inconvenient questions about vaccine safety or any other reasonable environmental factor.

For my part, I wonder how a neurologist can turn his back on considering genetic conditions worthy of intervention. I wonder how a scientist who supports the idea of gene-environment interactions can turn his back on genetics.

Dr. Poling closes with this statement:

In the end, logic and reason will prevail over politics and profits.

God, I hope so. Unfortunately, Dr. Poling seems to have allied himself with groups who have abandoned logic. Generation Rescue and David Kirby come readily to mind.

Texas "Fight Club" at school for mentally disabled

12 Mar

These sort of stories just anger us all, I know. But, these stories need to incite some public outrage.

CNN has a story about a Texas school for the mentally disabled where the staff appear to have been staging “fight clubs” amongst the students.

The situation came to light when a cell phone was found with videos. Yep, someone had been making videos of the fights since at least 2007.

Corpus Christi police received the cell phone a week ago, Wilson said, after someone found it and gave it to an officer working security at a hospital. The officer looked at several of the videos and then gave the phone to the police’s forensic unit for analysis. More videos were found in the phone’s memory.

“It appears it was some sort of a fight club,” Wilson said. Twenty videos were found on the phone, with dates going back about a year. All the videos featured the school’s “clients,” who are severely mentally handicapped, he said.

In case you are reading this: Mr. Security officer, you did right. Too bad you weren’t around to stop the fights.

Here’s how the fights are described by CNN:

On the videos, the clients “are not upset like they are being forced,” Wilson said. “They are being more goaded into it. There’s a lot of voices on there from workers … saying, ‘Look at that, ha ha’ … laughing, stuff like that.”

No clients are seen crying, upset or injured on the videos, he said, but none of the workers is seen stopping the fighting.

“The fighting entails pushing, wrestling and some shoving,” Wilson said.

So, likely there weren’t many injuries that would raise red flags. But, I am still enraged. What kind of sick person would encourage and get pleasure out of this?

To the Corpus Cristi police and District Attorneys: I know that the laws tend to be weak in fighting this sort of abuse. Please do everything you can to make sure the people responsible are punished.

Facebook is the new vaccines

11 Mar

I thought I’d maybe travelled a couple of weeks forward in time and was reading a particularly stupid April Fools joke news report when I saw the Daily Mail were reporting:

Of course, we do not know whether the current increase in autism is due more to increased awareness and diagnosis of autism, or whether it can – if there is a true increase – be in any way linked to an increased prevalence among people of spending time in screen relationships. Surely it is a point worth considering,’ she added.

‘She’ in this instance is Professor Susan Greenfield of Oxford University, which just goes to show that even a massively intelligent person can also be a monumental idiot on occasion too. Some other gems of wisdom include:

‘My fear is that these technologies are infantilising the brain into the state of small children who are attracted by buzzing noises and bright lights, who have a small attention span and who live for the moment.’

Buzzing noises and bright lights. I think these opinions reflect the lack of experience Professor Greenfield has with computers rather than any accurate reflection of how a PC or Mac actually works.

Note something about this totally ridiculous piece of journalism. They use buzzwords like Twitter and Facebook that the average uninformed Daily Mail reader might’ve seen but have no real idea about. They also clearly are talking about the opinions of one woman. At no point is any study or science referenced to support this Professors opinions.

In the eighties the Daily Mail was one of those newspapers convinced that ‘video nasties’ (straight to video low budget horror movies) would bring about the end of civilisation. In the nineties they were of course standard bearers for antivaccination beliefs. In the noughties they’ve published a few pieces on the evils of the nasty Intraweb.

But of course what really annoys me about this is the fastening on to autism. Its explained how naturally autistic people function online is a possible example of how the online environment (Facebook, Bebo, Twitter etc) are (oh dear god!) rewiring the brains of our children and making them autistic.

Never mind the fact that most new cases of autism are diagnosed in kids under three whos only interaction with a PC up to that point would be to try and push a rusk into the DVD tray. Never mind the fact that adult autistics are pretty wary of social networks at first. Lets just find another way to demonise autism and blame it on something else for which there is no supporting science whatsoever.

ASAN: Lindt Chocolates and Autism Speaks

10 Mar

Below is a letter from ASAN’s Ari Ne’eman. Lindt Chocolates has a fundraising campaign to sponsor Autism Speaks and organization which has no autistics in prominent, decision-making positions.

Recently, Lindt Chocolates announced a fundraising campaign for Autism Speaks, an organization that excludes autistic people themselves from its decision-making, uses offensive and unethical advertising tactics based on fear and pity and raises funds for the eugenic elimination of the autism spectrum. Too often, money raised to improve our lives goes towards organizations that don’t speak for us and work against our interests. People with disabilities of all kinds have a right to be at the center of the decisions made about us, not standing at the sidelines. We’ve started an action alert to tell Lindt Chocolates that its money is better used elsewhere, with charities whose work will benefit the lives of autistic people rather than aim to eliminate us. Click here to go to our action alert or go to: http://www.change.org/autisticadvocacy/actions/view/tell_lindt_chocolates_that_autism_speaks_doesnt_speak_for_us

The action alert allows you to write your own e-mail or use a form letter already available, however, for those of you who want to write your own e-mail or can’t use the action alert for whatever reason, here are some talking points on why Autism Speaks is bad for the autism and autistic communities. Lindt Chocolate’s e-mail is here: lindt@qualitycustomercare.com

-Autism Speaks is an autism organization that claims to speak for autistic people, without a single autistic person on its board of directors or leadership. This is far out of line with the mainstream of the disability community, where individuals with disabilities work side by side with family members, professionals and others to achieve quality of life and equality of opportunity. Autism Speaks’ exclusionary policies are an embarrassment to itself and its funders.

-Autism Speaks advertising is highly offensive to autistic people and our families, with ads that compare a life on the autism spectrum to a car accident, being struck by lightning, a terminal illness and other fatal situations. Rather than work to decrease stigma and increase respect for autistic people, Autism Speaks’ advertising fosters pity, shame and fear, suggesting that our very lives are mistakes and burdens.

-Autism Speaks’ fundraising goes towards genetic research aimed at developing a prenatal test with potentially eugenic applications. Given the fact that 92% of fetuses that test positive for Down Syndrome are selectively aborted prior to birth, we are concerned by the prospect of a similar result in respect to the autism spectrum. This is an issue of discrimination, wholly separate from typical abortion politics. Money raised in the name of autistic people should go towards opportunities for quality of life, not towards our elimination. Autism Speaks research agenda is overwhelmingly focused on causation and prevention rather than research initiatives that might support quality of life for all autistic people. This drains support from initiatives that stand to improve the quality of life of autistic people, such as services, supports and education, which Autism Speaks supports in only a tiny fraction of its massive budget.

Thank you to those who alerted us of this situation and we urge your immediate support. Together, our voices cannot be ignored. Nothing About Us, Without Us!

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

The Lindt fundraiser has already been blogged by abfh. If you know of any others, let me know and I’ll link to them here.

For example.

Media dis&dat has ASAN protests Lindt Chocolates-Autism Speaks fundraising tactics.

Change.org included this in their Monday Autism News Potpourri.

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