Archive | 2007

Still Closed, but open to reference

27 Nov

As per the title. The comment form is disabled, no new posts will be forthcoming, but you can reference existing posts. The following is why this blog is and will remain closed:

This blog has been going now and in form or another for nearly five years. Its one the oldset autism related blogs on the web. Its charted and reflected my own beliefs as well as Megan’s progress.

Its been the scene of many a happy moment, many a funny moment and many a screaming flame war. None of that really mattered as it was between adults. Adults who all believed, despite their differences, that they were doing what they thought was right, even if we disagreed with each other sometimes.

One of the most personally life-altering events of my life has happened because of this blog. After my wedding and the birth of my children, I think meeting, befriending and spending time with the McCarron family after the killing of Katie was something that I will never forget. We continue to speak every week and I have spoken to Mike as I have spoken to Naomi, my wife, about this choice.

The reason LB/RB is shutting is because I cannot continue to allow my beautiful eldest girl to be exposed to the hatred and bullying she is recieving from John Best. John has seen fit to compare my beautiful child to a trained monkey because he didn’t like the fact she was progressing. He has made numerous jokes at her expense on that theme. He has assumed her identity online. He has encouraged others to do the same.

Let me be clear. I do not care one iota what this cowardly idiot thinks of me. He can write whatever he wants. But he has involved my daughter. Not to reference her progression. Not to quote me. But to laugh at her and to put words in her seven year old mouth.

I genuinely fear for her safety at the hands of this person (I will refrain from calling someone who picks on children ‘a man’). Three days running he has posted blog entries about her, two of which assume her identity and one of which is attempting to gain money in her name. I do not know where he would stop. Therefore the only way to make her safe is to remove us from his presence.

I am also relinquishing any and all control/ownership/admin rights over Autism Hub.

I would like to thank all of the many friends I have made via this blog over the last five years. You were a great support. I would like to urge you to keep up the fight. But maybe remain anonymous. Especially those of you with kids. The John Best’s of this world are more than ready to attack your children.

A small message also to those who are glad to see me go. Enjoy it. But ask yourself if attacking children – disabled children – is the right way to achieve this. Ask John some hard questions. Or don’t ask any questions. But next time you put your child to bed, look at their face and remember my Meg and how it wasn’t truth, science or accuracy that made me leave but one cowardly man who likes to laugh at autistic kids just like yours.

Lastly, many people contributed financially over the last month to LB/RB. I’m sorry your contribution was so short lived. I will make sure any spare money will be donated to a cause you would approve of.

The starting gun

10 Oct

One of my high school philosophy teachers (at a Jesuit high school here in St. Louis) used popular music of the time (70’s and early 80’s) as a tool in classes. I mostly remember using Supertramp (Crime of the Century) and some Pink Floyd (“Welcome to the Machine” was a favorite). No surprise, then, that this habit continues to today. Check out the pop-culture label at 29 Marbles for some of my earlier posts using pop-culture as the starting point.

I’ve been a Pink Floyd fan for a long time, and like any true Pink Floyd fan count The Dark Side of the Moon among my favorite albums, by anyone, of all time. The song “Time” is an excellent reflection of the fleeting nature of our time in this world. The second verse includes the following lyrics:

You are young and life is long and there is time to kill today
And then one day you find ten years have got behind you
No one told you when to run, you missed the starting gun.

These lyrics are quite literal, and it is not too difficult to catch the meaning. But I gained a bit more insight into these words, especially the last line, while watching a documentary of the making of the album (told 30 years after the fact).

In the documentary, Roger Waters talks about a teenage conversation with his mother and the realization that it was time for him to start living his own life, that the “starting gun” had fired. One of the most important jobs a parent has is preparing kids for life on their own (however you may define that), a life that they are in control of (to the extent that anyone is control of their own lives).

There is a somewhat well defined path that we typically, though not always, can follow with our normal (in the statistical sense) kids. And many of us have come up with our own ways of preparing our kids for what lies beyond childhood.

But how do we let our kids, especially our autistic kids, know that the starting gun has fired?

New Evidence Based Autism Blog

8 Oct

Autism News Beat is a new blog that looks to become:

….a resource for journalists looking for accurate, evidence-based information about autism.

Lets hope it can reach its intended audience!

When High Does Mean Low: Autism, mHBOT, and Dan Rossignol

7 Oct

A while back on Autism Street, I questioned the claim by DAN! doctor, Dan Rossignol, that children he wrote about in an article that appeared in the pay-to-publish, not peer-reviewed journal Medical Hypotheses, were treated with “mild hyperbarics” at 1.3 ATA.

In hyperbaric medicine, the term “1.3 ATA” has the very specific scientific meaning of “1.3 Atmospheres Absolute”, and it is a likely overstatement (due to rounding) of the actual treatment pressure in that particular study. Put simply, “atmospheres absolute” refers to the total pressure, and includes that actual pressure of the atmosphere. It’s also an absolute pressure that is apparently beyond the physical capabilities of the equipment that was used (a Vitaeris 320), unless the chamber were located well below sea-level, or housed inside another, larger, and pressurized hyperbaric chamber. I suggested that he publish an erratum. He was kind enough to reply to my e-mail, in which he responded, in part with:

HBOT measurements are typically reported to 2 significant figures, i.e. 1.3, 1.5, 2.0, 2.4, 3.0 ATA, etc… Therefore, this properly rounds to 1.3 ATA (we did not report the pressure to 3 significant figures as would be the case with 1.30 ATA).

As it turns out, this may not be entirely true. I responded with the following:

At least two of the papers cited in your references (Collet et al., and Montgomery et al.) show treatment pressures of 1.75 atmospheres. There might even be more. Would those have been acceptable to be published at 1.8? Do you think a real peer-reviewed journal would be requiring that you publish an erratum? I think so, but I could be wrong. In many of the “typical” numbers you list, reporting to 2 significant figures does not change the accuracy anyway (2.0 ATA is stated instead of 2.00 ATA, 3.0 ATA instead of 3.00 ATA, etc.).

Dr. Rossignol, to my knowledge, did not publish an erratum. He did not comment on the apparent overstatement of treatment pressure further. So it would appear that he intends to stick with his assertion that,

HBOT measurements are typically reported to 2 significant figures, i.e. 1.3, 1.5, 2.0, 2.4, 3.0 ATA, etc…

That’s fine, we can work with that, but remember it. It’s going to be very important in a minute.

I later wrote a little more about the physics of so-called “mild hyperbarics” again, and included a notation of a new study that Dr. Rossignol, appeared to be working on.

There’s another “hyperbaric therapy as a treatment for autism” study underway. It appears to be headed up by Dr. Rossignol, and has three clinical locations supervised by Doctors Liz Mumper (Virginia), Cindy Schneider (Arizona) and Jeff Bradstreet (Florida) – none of which appear (according to a search at ABMS) to have board certification in Developmental-Behavioral Pediatrics, Child Neurology, Neurodevelopmental Disabilities or Undersea & Hyperbaric Medicine.

Well, it looks as though that study has wrapped up. Is there a forthcoming publication that will claim that the children in the study were treated with “mild hyperbarics” at 1.3 ATA? Will it be published in a journal like Medical Hypotheses, JAPandS, or Medical Veritas? If it’s headed for a respectable peer-reviewed medical journal, and the treatment pressure is claimed to be 1.3 ATA, there might be a problem.

You see, in the real world, a Vitaeris 320, is probably not a hyperbaric chamber that can produce a full 1.3 Atmospheres Absolute – even at sea-level. Its non-rigid construction means that it’s directly influenced by the ambient atmospheric pressure. To calculate the absolute pressure inside the chamber at any given time doesn’t require anything more than knowing the current actual atmospheric pressure outside the chamber, and the slight pressure added by the compressor that inflates it. Although it does vary slightly, at sea-level the average atmospheric pressure is about 14.696 PSI. According to the manufacturer’s spec sheet, the chamber introduces an operating pressure of 4 PSI, which would yield a total pressure of about 18.696 PSI – 1.27 ATA. Don’t forget, that’s at sea-level!

The study mentioned above, lists the following clinical trial locations:
Phoenix, Arizona
Melbourne, Florida
Charlottesville, Virginia
Lynchburg, Virginia

Are all of those cities at sea-level? No.

Will this matter? Absolutely.

It’s a simple fact of physics that as elevation increases, atmospheric pressure decreases. Although there are several influencing variables involved, this is probably most easily understood in layman’s terms by knowing that weight of the column of air above you gets smaller as your altitude increases (as you ascend, the column above you is shorter and simply weighs less – exerting less pressure).

So what does this mean for this study? It means that if the study used Vitaeris 320 chambers, and reports that children were treated with 1.3 Atmospheres Absolute, it should raise more than a few eyebrows.

Firstly, if the study does not report actual atmospheric data for pressure at the study locations during treatment, it will be incomplete. Remember, for a non-rigid chamber, treatment pressure is measured by adding the actual ambient pressure to the pressure added by the compressor used to inflate the chamber. There is no way to measure the actual treatment pressure without knowing the actual ambient atmospheric pressure at the time of treatment.

Side note: It could be tempting for one to read a weather report from the National Weather Service in the U.S. and simply think that the pressure reported is the actual ambient atmospheric pressure at the study location (station pressure). Unfortunately, that’s not how it usually works. The National Weather Service typically reports “altimeter pressure” and “sea-level pressure”. See section 11.6, Table 11-2 from the Federal Meteorological Handbook No. 1. These adjusted pressures (corrected for elevation and temperature) are done to make pressure systems on weather maps more meaningful (and not simply reflective of the topography), and to allow aircraft pilots to adjust their instruments to the current conditions. With an altimeter calibrated to what the pressure “would be” at sea-level, instruments can accurately reflect the actual altitude of the plane. This is important if you intend to land on a runway that is always 1135 ft. above sea-level.

Secondly, if the study does not claim to have “measured” the treatment pressure, but instead asserts that it is 1.3 ATA, it will be difficult for any publication to substantiate the claim that the treatment pressure was uniformly (or even approximately) 1.3 Atmospheres Absolute at all study locations, due to the varying elevations of the study locations.

Let’s use Phoenix, Arizona (one of the study locations) as an example. The elevation of Phoenix, Arizona is approximately 1135 ft. above sea-level. This means that the ambient atmospheric pressure is about 14.10 PSI simply due to the elevation. 14.10 PSI plus an added 4 PSI gives us a total of 18.10 PSI – 1.232 ATA! Using Dr. Rossignol’s statement,

“HBOT measurements are typically reported to 2 significant figures, i.e. 1.3, 1.5, 2.0, 2.4, 3.0 ATA, etc…”

1.232 ATA in Dr. Rossignol’s words, “properly rounds to” 1.2 ATA!

Will the study report this? Or will it claim a very unlikely (if not impossible) treatment pressure of 1.3 Atmospheres Absolute? Following Dr. Rossignol’s apparent rounding preferences, we’re talking about a potential overstatement of the pressure added by the hyperbaric chamber of 50% for Phoenix alone. The Lynchburg, Virgina study location will quite likely present similar problems (elevation 938 ft. above sea-level) for Rossignol’s work. Is Dr. Rossignol, really concerned about the accuracy of the science in his work? We might just find out soon enough.

For anyone interested, here’s a table of estimated total pressure provided by a Vitaeris 320 at selected U.S. cities. Keep in mind that these estimates reflect the manufacturer’s specification of 4 PSI of operating pressure, and the expected atmospheric pressure due to elevation alone, and do not account for the slight variations in the weather. (Elevations retrieved from Airnav.com).

Estimated total pressure provided by a Vitaeris 320 at selected U.S. cities

It’s no surprise that parents of autistic children who “believe” that “mild hyperbarics” will somehow provide benefit for autism itself, would seek insurance reimbursement. In fact, some may interpret a statement by Dr. Rossignol to express such a view:

One of the reasons we wanted to study the 1.3 ATA chambers is because this is something that is available at home. We hope that if it does work and is proven, we can begin to have insurance reimburse for hyperbaric and this is one of our goals, as well.

Source

Besides the obvious problem that scientifically “proving” that treatment with “1.3 ATA” will be difficult with chambers that likely don’t provide 1.3 Atmospheres Absolute, what are insurance companies supposed to think? Would insurance companies like the idea of reimbursing for HBOT treatment at a specific pressure that really isn’t?

Autism is a trait

6 Oct

Tyrin RencherDriving yesterday evening, I passed a bus stop with a United Way advertisement with the slogan, “Autism is a trait, not a debilitation.” Obviously, when I made my way back online, I tried to find out a bit more about this United Way Campaign.

Through Google, I found a link to the campaign on the United Way website. Unfortunately, when I tried the link I received a 404 error. Hopefully it comes back up soon.

There was also a link to a story in the Belleville (Illinois) News-Democrat about the spokesman of the campaign, Tyrin Rencher (pictured at right).

He is on posters, pamphlets and television screens all around the St. Louis region as one of the many faces of the United Way fundraising campaign this season.

Most people probably recognize Tyrin Rencher as the smiling young man in a red apron standing in the kitchen at Pasta Fare in Fairview Heights beneath the slogan: “Autism is a trait, not a debilitation.”

Rencher, 27, of East St. Louis, has autism. He was diagnosed with autism at 2 1/2 years old and was enrolled in the Illinois Center for Autism in Fairview Heights when he was 3. He still receives services through the organization and was selected as a spokesman for the United Way campaign this year and as a spokesman for the Illinois Center for Autism.

The article also gives a bit of bit of Tyrin’s history and what he’s up to today (besides being a “celebrity”):

He is currently a junior at the University of Missouri St. Louis, where he is working toward a degree in business administration.

When talking to Rencher, a person quickly learns that he’s a man determined to fulfill his dreams, in spite of the autism, and he is an example of the slogan over his head on the United Way posters.

“A lot of the stuff I planned is coming true and I’m speechless that it is all happening,” he said. “I want to open up a restaurant with my degree. Something small, like (Pasta Fare.)”

He is thankful the Illinois Center of Autism was around when he was diagnosed when he was a toddler.

“Without them, I would be lost,” he said. “I really wouldn’t be in a position to go to college right now.”

He is learning to live on his own for the first time, something that he sometimes finds difficult.

“But I’m learning, it’s tough, but I’m trying to adjust to living on my own,” Rencher said. “One of the things my family has taught me is perseverance, and I do that every day.”

I love to see “good news” stories about autism, and this is one of the “goodest” I’ve seen in a while: it shows an autistic adult making his way in the world, it shows that an autistic person’s dreams and life aspirations are just like the rest of ours, and it shows an organization dedicated to helping people make their way in the world AS THEY ARE instead of trying to fundamentally change them.

Why I went to School

5 Oct

By Guest Blogger TITO RAJARSHI MUKHOPADHYAY

I was either sitting in my class room or on one of those hanging clouds, which I saw outside before entering the school building, dangling my legs down towards the earth.

Wherever I was I was fascinated. How many heads can the earth hold? So I had to jump down only to realize that perhaps I had a big change inside or outside me. I had a definite idea that I got transformed into a hat. And as a hat, which was possessed with fascination and curiosity about those many heads on earth I was left with no option but to stand up and get busy.

I first happened to sniff Mr. Butler’s head, which happened to be bald and shine from the light of the fluorescent lamps of the classroom, reflecting them in a mysterious way. ‘Would it reflect my nose too?’ Mr. Butler had no idea about my keen interest on his head. So he had to stand up. And because he stood up I had to move on to a new head.

This was the head of Simon or Dan. The name did not matter much to me now. The head mattered. It was a hair filled head and there was enough room to sniff. Sniffing a hair filled head needs a good experience. You would not know what mystery it hides below the hairs. From my past experience I have known that each hair filled head is a smelling mine by its own rights specially, during a midday. I think Simon or Dan, whoever was the owner of that head enjoyed my nosey quest. That is because like me who is affected by Titoism, he was affected by Simonism or Danism.

However his one on one aide Ms. Jackson did not approve of my inspection. So I had no option but move on towards her head. It was complex!

By now there was a murmur of alertness in the class. Maybe they could sense the presence of a very nosey hat around which was dutifully completing what it was supposed to do. -Smell the rest of the heads!

I came back home later with some memories of learning about the many smells I collected in my olfactory channel.

After all we go to school to learn.

Epidemic or greater awareness?

4 Oct

OK, this one has been beaten to death. I am amazed that it still think that there is evidence of an “epidemic”. This is especially true of those who rely on the California Department of Developmental Services (CDDS) data. These data are so muddy as to be able to hide a real increase or a real decline.

These data have severe limitations as noted before on this blog. They are not “epidemiological” data. They are not a census of those with autism in California. They are a count of who is getting services and this can and does vary dramatically over time and geography.

1984 Birth CohortThat said, let’s take a look at how service rates change with time for a given birth cohort. (click to enlarge). [edit: this is the 1984 cohort] This is much as you would expect. Kids start being listed at age 3. The number increases year after year until a plateau is reached. This happens at about age 7 or 8. There is some slope to the curve: additional kids are being added to the roll even after 8 years old.

This is very straitforward and expected. But, what happens over a longer time to this cohort? Click to enlarge this graph.1984 Birth Cohort CDDS Data Ignoring the obviously leading arrow and label for now, it is abundantly clear that something unexpected has happened. A second large increase in the number of clients is observed. Why would this happen? Well, one of the possible explanations is shown by the arrow. In 1997, the “epidemic” was declared. Autism awareness increased dramatically.  One possibility is that the 1984 cohort was still in school where people might notice them and identifiy them. This cohort nearly doubled in numbers from 1997 to 2003. 

This brings up so many questions, many of which we just can’t answer with the data we have access to.

It would be interesting to see if there was substitution. Were these kids (heck, teenagers) listed by CDDS under a different label?

How did roughly half the kids in this cohort avoid detection? I think the new phrase is “it’s like missing a forrest fire”. Well, these forrest fires were blazing for 13 years before people started noticing them.

Also, what happened to other cohorts? Well, for one thing, a similar jump in cohort size around 1997 is observed for birth years in the 1980’s and early 1990’s. It isn’t as clear or as consistent birthyear-to-birthyear as you go back in birthyears, but it is observable in some birth cohorts. One example where one can see this is the 1960 birth cohort, which increased about 15% around year 2000.

That last paragrah wasn’t clearly written, I admit. But if you are thinking, “what? The CDDS ‘found’ 15% more 40 year olds?” you read it right.CDDS clients by year as listed in 1986 and 2007 This graph (click to enlarge) shows the number of CDDS autism clients as listed in 1986 and 2007 by birth year. The 1986 (in black) data are the same as shown before. The drop in the client count in the early 1980’s is an artifact: those kids weren’t identified yet in 1986. The 2007 client count (in red) show something very interesting, at least to me.

There is an increase in autism clients for almost all the birth year groups. 40-year olds, 50 year-0lds, even older people were added to the client list as “autistic”. Again, we don’t know if or how these people were classified before the “epidemic”. They could have been (and likely were, in my opinion) clients listed in another category in 1986.

Let’s take a look at the difference between these two curves. I included data for people with birthdays in the early 1980’s, but these are not reliable. Those people weren’t through the first round of identification by 1986. 

CDDS Autism Clients in 1986 and 1997 by birth yearThe graph shows the difference as a percentage increase. This allows us to see the older cohorts easier. At the same time, it allows people to accuse me of doctoring the data to make it seem like a bigger effect than it really is. That would be an obvious way to try to divert attention from the fact that the “epidemic” caused a roughly 40% increase in CDDS autism clients born in the 1960’s. For those clients born from 1940-1955, the increase was 70+/-28%.

Think about that a second. Autism amongst forty year old people increased by 70% during “the epidemic” years.

How can this be? How could CDDS have missed people with autism for forty or fifty years? Sure, some of these people may have moved into the state. Some of them may have been cared for by family and not been served by CDDS. The trends of these birth cohorts with time do not show the sharp rise in the late 1990’s as observed above for 1980’s cohorts.  For me, this is suggestive that the those who could be identified in the school systems, were.

Obviously there are a lot of open questions here.  How and why these increases were observed is a big question.  Why no one has seen fit to mention this before is another question.  The CDDS did not create these data sets for me.  Someone else has been paying for that for some time, according to Mr. Kirby…who also hasn’t mentioned this.

People keep saying, “you can’t have a genetic epidemic”.  Well, you can’t have an epidemic of a childhood onset “disease” in forty-year-olds either.

____________________________________________

Edit: 

CDDS Clients vs. year for multiple birth cohorts First, note that the birth cohort in the first figue above is from 1984.  That is not clear.  Second, here is a graph with multiple cohorts.  Note that all the cohorts have an upswing in the client-numbers in the late 1990’s.  Even the 1990 cohort does this.  It does not appear to be based on age, but on calendar year.