Autism Street

The 42nd meeting of the Skeptics’ Circle is up Immunoblogging.
Beware the Zombies!

Can’t cross the street without having to dodge numerous zombies all after your brains. What’s worse is they are all into various forms of pseudoscience, woo and quackery. Perhaps it might all be the result of dumping too much nuclear waste into the rivers and I assure you, we’ll be returning to the subject of nuclear waste later in the circle. Everything ultimately is blamed on nuclear waste eventually anyway. First it’s poisoning the water, then ruining the air quality, then making people sick and eventually raising the living dead. You know how it goes.

I’d like to welcome another guest blogger to Autism Street. She’s someone I know to be generous with her time, inquisitive, often skeptical, but most of all, thoughtful. She’s put together an interesting examination of perception based on an analogy, for your literary enjoyment. Without further ado, here’s Mum To Laura.

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Disclaimer:  What follows is not intended to be a realistic portrayal of visual impairments or persons with visual impairments.  It is only an analogy.

Just imagine . . .

That there was such a thing as the blindness spectrum (BS).  Originally, blindness was very strictly defined, as being totally blind, or with severe visual impairment.  Then, in the 1990’s the new concept of the blindness spectrum came into use.  Since there was no clear distinction separating those having severe visual impairment and those who needed thick glasses, the terms BS came to include all those people who had any kind of visual impairment. 

At that same time, an amazing epidemic of BS arose.  Everywhere, people suddenly saw children wearing glasses.  Parents were, of course, devastated to believe that their child was blind.  They worried about their future in a sighted world.  They formed support groups to discuss techniques for curing their children of BS.

Scientists pointed out that there was no clear evidence of a BS epidemic.  “It is just that more children are being diagnosed on the blindness spectrum”, they claimed.  “When we look back at studies from the past we see that up to 5 in 10000 people were blind.  Now that the spectrum has broadened, up to 1 in 166 people needs glasses.  Of course, it is also partially due to greater awareness.  Parents take their children to an optometrist at young ages now.  Many cases of children with BS were missed in the past.” 

Parents were unconvinced.  “That simply goes against common sense”, they railed.  “When I was going to school, no one in my class had glasses.  Now, there are four children in my child’s class on the BS.”  Others argued, “My child is totally blind. There is no way you can miss a child like that.”  They found support from one another.  No one pointed out that parents of children with mild BS were getting on with their lives, and were not taking part in these on-line support groups.

Since BS was incurable, controversy arose.  Some parents blamed vaccines.  “My child could see just fine up to the age of 18 months.  I just know he could.  Then he had all those vaccines, and he started showing signs of lack of vision.  A year later, we finally had the test to show that he needed glasses!  I was devastated!”  Others pointed out that young babies cannot see well because their vision is not well developed.  “How did you know that your child was not on the BS from birth?” they asked.

Almost 20 years ago, a scientist in California published a paper claiming that vision could be restored using a technique where trained workers spent many hours per day doing eye exercises with blind children.  This technique, known as ABA (Alleviate Blindness Activities), was claimed to completely restore sight to almost 50% of blind children receiving the intensive treatment.  Despite many efforts to replicate this study, no case controlled study has duplicated these results.  However, parents pointed to other studies showing that ABA could help blind children become potty trained, count to 10 and play the piano, as proof that ABA was effective against blindness.  They demanded this expensive treatment for all those on the BS. 

Others pointed out that ABA might be just a bit unethical.  They argued that the gains shown in the original study were entirely dependent on the workers slapping blind children around to keep their attention focused on the eye exercises. They pointed out that ABA had also been shown to eliminate the special advantages of blind children – having more acute hearing and sense of touch.  This argument was met with extreme hostility.  “You are taking away hope from parents of the newly diagnosed blind!” they screamed.  “What do you want us to do - let our blind children rot with no treatment?”

To press the urgency of their case, parents pointed to the epidemic of BS.  “6000% increase in blindness” read the headline on the full-page ads.  “Blindness is now the most commonly diagnosed childhood disability, affecting one child in 166!” they screamed.  “We demand action.  We demand research into vaccines as a cause of blindness.  We demand ABA for all children with blindness.”  Of course, they conveniently forgot that “blindness” was not synonymous with BS – the ads mentioned only blindness.  They forgot that the rules for funding ABA allowed treatment only for children on the severe end of the BS.  All those considerations were swept away in the quest to draw attention to their cause.

Nothing could stop the hysteria.  Just imagine . . .

- Mum To Laura

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A fantastic eveing awaits at the 41st Meeting of The Skeptics’ Circle. This time around it’s hosted by Interverbal.

Good evening ladies and gentlemen, I would like to welcome you to the
41st Skeptic’s Circle which is of course, Awards Night!

There’s some fantastic skeptical blogging from the past couple of weeks assembled for your perusing pleasure.  Don’t forget the “after” parties if you’re the kind who likes to make the scene.

Black-tie suggested, but certainly not required. A click on this tie will take you straight there.

If there was machine that could pick an appropriate bumper sticker to accurately represent the information that underlies common beliefs and scientific knowledge, would the information you hold to be true, generate this sticker?

Hopefully not, and I certainly don’t intend to criticize anyone for the holding of any particular belief in and of itself, but I do think it potentially worthwhile to examine the basis of such beliefs or understanding from time to time.

Suggestion of being lost is not necessarily a suggestion about intelligence or gullibility. It’s possible that being lost could be a result of being misled. As I saw it written by someone I think is a great blogger in the comments of another blog,

“It is a myth that you have to be stupid or gullible in order to be misled.”

Now it’s time to read up, and see if some information relayed by ASU professor Dr. Jim Adams could potentially be a little on the misleading side.
 

ASU Professor Dr. Jim Adams on autism epidemiology

From March 2nd of this year: Article in Tucson Weekly

“There is no doubt that the number of reported cases has dramatically increased, from three or four cases per 10,000 20 years ago to one in 166. And according to the best data we have, which is from California, where there’s a fixed set of diagnostic criteria and a good reporting system, cases have increased every year that they’ve been counting–until last year, when there was a slight decrease,” says Adams.

“That could be a statistical blip, but coming after an unbroken string of increases, it may be significant.”

Were you able to spot the potential problems with this one?

Potential Problem 1 - Here’s a hint: What does the 1 in 166 refer to?
That’s right, autism AND autism spectrum disorders like Asperger’s and PDD-NOS.

Study Questions: Aside from likely increased awareness/recognition and diagnostic substitution, did the autism diagnoses of twenty years ago include Asperger’s and PDD-NOS? When did autism become recognized as a broad spectrum disorder? Is “three or four cases per 10,000 20 years ago to one in 166″ evidence of an epidemic, or comparing apples to oranges?

For a starting point and good blogging about this, I recommend the following articles from Autism - Natural Variation:

No Autism Epidemic: An Update
No Evidence of “Epidemic” from Prevalence Studies
No Autism Epidemic: Summary of the Numerical Evidence

And this one from Autism Diva: 

One point five? 

Potential Problem 2 - Here’s a hint: Was there really a slight decrease in cases last year?
That’s right, it depends on what you mean by “decrease” and ”cases”.

Study Question: What data does California’s DDS report, and was there really a decrease last year?

For a starting point and good blogging about this, I recommend the following articles from Autism - Natural Variation:

CDDS Data 101
One More Time on “New Cases” for David Kirby and Others
Open Letter to Journal of Physicians and Surgeons

From a recent telephone interview with Jim Adams conducted by another blogger (sometime after the recent Dateline piece that featured Jim Adams):

“The incidence in autism is best been measured by, um the state of California. And their latest statistics, as Rick Rollens has steadily reported, the latest statistics seem to show a decrease in the last uh year… and so …will that continue, or is it just a blip? We don’t know. But it’s been increasing steadily for 20 years and now to see a decrease right about the time we thought it would, is um certainly compelling.”

Hey that sounds kind of familiar. In fact it sounds similar to what Adams said back in March. But wait…didn’t California release two new full quarters of data since then? As a matter of fact they did.

Have you spotted the potential problem with this one yet?

Potential Problem 3 - Here’s a hint: Has Rick Rollens reported on CDDS data for Q2 of 2006?
That’s right, apparently he hasn’t. Adams’s statement looks to be based on old data, and a possible misinterpretation of the data at that. Note: It’s possible that the interview was conducted prior to California’s release of the 2006 Q2 data. If that’s the case, perhaps Dr. Adams can clarify that, and whether or not he maintains the same opinion following examination of the Q2 data, as he did when the interview took place.

Study Question: Please look at the following graph. This is a graph of the CDDS 3-5 year-old autism caseload cohort data for the past 4 years (16 consecutive quarters), and includes the data for Q1 and Q2 of 2006.

Source Data

What do you see? Any decreases? Any statistical “blips”?

It’s pretty easy to understand that if you’re looking for a change in administrative incidence due to a hypothesized effect of the removal of Thimerosal-containing vaccines, the clearest picture of any hypothesized effect is likely to be found in this age group first.

Apparently, even Mr. “Evidence Of Harm”, David Kirby himself, has acknowledged this in an e-mail to blogger Citizen Cain.

Slouching Toward Truth– Autism and Mercury

But in an e-mail, he did address the key point, and concede that “if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.”  He also conceded that total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

For good blogging about why total cases are the right measure, see the following article, also from blogger Citizen Cain:

Questions for David Kirby– Dataphobes Beware

As to what might happen in the next couple of quarters in California is anybody’s guess. Remember, if you think “the mercury in vaccines dunnit,”  it’s got to be a drop in total caseload, not a decrease in caseload growth. Decreases in caseload growth (a leveling off) are a known eventuality.

Other recommended blogging on the subject:

CDDS Data, Flu Vaccines And Likely Predictions

Earlier this year, I had a conversation with an AIT provider who apparently has a pretty sweet arrangement with The Arizona Department of Economic Security’s (DES) Division of Developmental Disabilities (DDD). As I understand it, this provider has been receiving reimbursement for 25 hours of Speech Therapy in exchange for providing 10 hours of AIT. Can you say, “got two tens for a five”? As far as I know, although approved by the DES/DDD, the treatment was probably funded by Arizona’s Health Care Cost Containment System’s (AHCCCS) Arizona Long Term Care System (ALTCS), which is essentially supplemental health insurance.

At the time, I sent a response to information sent by the SLP-CCC (Speech Language Pathologist - Certified Clinically Competent) and copied that response, to the DES/DDD with the following input provided to the DES/DDD:

“By copy of this letter to the DES/DDD assistant director, I’m informally recommending that the Arizona DES/DDD conduct their own review of policy that may allow for payment for Berard-based A.I.T. therapies, and communicate new policy based on that review, to its Arizona support coordinators.”

I didn’t receive any acknowledgement or other communication from the DES/DDD about this.

I heard through the parental “grapevine” that the DES/DDD might change or discontinue the approval for AIT with funding intended for Speech Therapy. Shortly after that, I received a couple of “not necessarily fact-based” e-mails from apparently upset (and I assume past or present) recipients of taxpayer-funded AIT. I don’t know if the DES/DDD is actually taking such action, but I have heard that there may be some sort of official announcement pending.

Among a couple of mostly whiny, entitlement-esque e-mails, I did receive one that was quite polite. Although the parent who authored this e-mail makes several fallacious logical appeals (lots of post hoc reasoning and appeals to “authorities” like Bernard Rimland, ARI, and the Autism Society of America), he/she did ask a valid question. Of course my answer to this question is beyond obvious to anyone who actually took the time to read my two previous posts about AIT and the actual peer-reviewed science indexed on pubmed, but I’m going to answer it again for benefit of anyone who may not have had sufficient time to do all of that reading. I can certainly see how raising kids might not leave time for this quantity of reading, and I know I’m fortunate to have a wife who is understanding with the amount of time I spend reading about autism and blogging.

Here is his/her question as written in a very nice e-mail:

“May I ask why you are so opposed to DDD funding for AIT?”

Here is my answer.
 
1. The peer-reviewed scientific literature indexed on pubmed makes it clear that to-date, AIT is not scientifically proven as an efficacious autism treatment.

Auditory integration training and other sound therapies for autism spectrum disorders: a systematic review.
Sinha Y, Silove N, Wheeler D, Williams K.
Arch Dis Child. 2006 Aug 10; [Epub ahead of print]

This is only one selection, but it’s a fairly complete research review that evaluated the available good peer-reviewed science with respect to AIT and autism. Although it is essentially the same review that was published in another journal in 2004, the fact that it is published in a peer-reviewed journal indexed by pubmed, means that the reviewers accepted this as a current state of the science - no additional scientific studies that would invalidate its findings (prove benefit of AIT for autism) appear to have been published in the pubmed-indexed, peer-reviewed medical literature between 2004-2006.

2. The 2004 ASHA position statement on AIT is clear.

Auditory Integration Training

[...The 2002 ASHA Work Group on AIT, after reviewing empirical research in the area to date, concludes that AIT has not met scientific standards for efficacy that would justify its practice by audiologists and speech-language pathologists. However, well-designed, institutionally approved, research protocols designed to assess the efficacy of AIT are encouraged. It is recommended that this position be reexamined should scientific, controlled studies supporting AIT’s effectiveness and safety become available. ...]

A straightforward interpretation indicates that according to ASHA, licensed speech language pathologists should not be practicing AIT outside of IRB-approved clinical research (let alone selling it).

3. A representative of ArSHA (the Arizona version of ASHA) communicated concern about this as well.

I don’t consider myself to have expertise when it comes to licensing requirements and ethics within specific professions, so I contacted ArSHA. Rather than file any kind of complaint, I simply asked for their opinion. Among several code of ethics legal references, I received the following comments:

“The position statement is ASHA’s official policy on AIT.  In light of this policy, individuals practicing AIT, and those considering doing so, should carefully consider the implications the position statement has on their ethical responsibilities, particularly Principle of Ethics I, Rule G, of the Code of Ethics”

“Based on what I have read, it does not appear that [he/she] is acting ethically under ASHA standards if you refer to their position statement.  I am concerned that DDD would pay for this treatment that is ‘experimental’ and hope that you have continued your course with them.”

I didn’t have to continue any course with the DDD, apparently they are conducting (or conducted) their own independent review of the available peer-reviewed science, the ASHA policy, and that particular reimbursement arrangement.

I also contacted ASHA asking only for an opinion, but was told that no opinion, other than the published position statement, would be rendered without filing a formal complaint; something I have neither the time nor interest in doing.

4. As I understand it, AIT was being billed to the DDD at a double rate - 25 hours of reimbursement for speech therapy in exchange for 10 hours of treatment (factoring in interview/evaluation time, that could be closer to 12 hours of “service”).

A potentially very sweet deal compared to any SLP’s who actually provide 25 hours (or more) for 25 hours of reimbursement.

5. I am opposed to DES/DDD AHCCCS/ALTCS funding ANY “treatment” that is ethically testable with randomized, double-blinded, controlled methods for efficacy and safety, and has either: A. Not been tested in this manner, or B. Failed to demonstrate efficacy or safety through such testing.

I’m especially opposed to funding going to “treatments” that fall into category B. that are potentially being billed disproportionately.

A couple of additional points for consideration 

For those who believe that AIT, as a defined benefit for persons with autism, should by approved/funded by the DES/DDD AHCCCS/ALTCS, set aside your “beliefs” about AIT for five minutes and think about the following:

I have no magic influence or special authority with the DES/DDD. If the DES/DDD does change their policy on how AIT is approved, funded, or they modify the particulars of how providers are reimbursed, it’s most likely to be a decision (or a set of decisions) based on facts like the ASHA position statement and the pubmed-indexed peer-reviewed published science. If you want to influence a decision that, at its core, will probably have been made based on available scientific evidence, you’ll need to come up with new or better scientific evidence. Such evidence would certainly be very likely to be required by ASHA in order for them to change their position statement as well. Although potentially influential if presented to a sympathetic decision-maker, testimonials, anecdotes, and appeal to popularity with parents, won’t change the state of the science. Encourage and participate in methodologically sound, safe, IRB-approved research of AIT.

The ASHA legal/ethics documentation strongly suggests that the AIT provider could have quite a licensing dilemma with the national and state certification boards in the presence of a formal complaint. I’m more of the view “caveat emptor” and have no intention of filing any complaints whatsoever. If people want to spend their own money on AIT, that’s their choice - even if the practicing SLP’s are doing so in disregard of their own certifying organization’s ethics and published policies.
 
I would encourage anyone to ask the particular provider to ”put his/her money where his/her mouth is”, so to speak. The AIT provider implied that money was not a motivation, AND that he/she OFTEN gives away AIT to families who cannot afford it.

“I’m also sorry you see this as me trying to make money.”
 
“I have dedicated much of my adult life to working with children and families, often at no charge when there is no funding. I also provide free AIT to about 5-6 children annually, again, who have no funding.”

Perhaps anyone who wants someone else to pay for their AIT should consider discussing this with the AIT provider directly. If as he/she claims that he/she is not in it for the money, and really does provide services OFTEN when there is no funding, it seems to me that he/she might be able to accommodate anyone who asks (if they really don’t have funding). Perhaps he/she would set up a heavily discounted version for people with limited funds - not that it will affect the actual efficacy of AIT for autism any.

Neurodiversity: Mark Geier and David Geier

The Neurodiversity Weblog has an interesting series about Mark Geier M.D. and David Geier. It covers the apparent evolution of what some refer to as “The Lupron Protocol”. Beyond some of the history and related articles that make up the underpinnings of this series, you’re likely to find what some people might consider potentially eyebrow-raising ethics. Although this most recent installment may border the unbelievable to some, if it were up to me to assign a grade to this entire series, I’d give it an “A”.

If you haven’t been following the Neurodiversity series about Mark Geir and David Geier’s research and publications, I don’t recommend expecting or trying to understand all of it within just a few minutes. Take some time, maybe print out the articles, and read one per night to get up-to-speed. Why? Because as difficult as it is to think possible, I understand there is more on the way.

For your convenience, here are links to all eight portions of the series so far (plus a few additional related posts):

Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part One)

Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part Two)

Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part Three)

Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part Four)

Plaintiffs’ Gambit Failed (RhoGAM Opinion)

Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part Five)

Update: A Republished Article

Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part Six)

Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part Seven)

Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part Eight) 

Autism Diva: Rain Mouse

Another fascinating read in my opinion, is the Rain Mouse related series by Autism Diva, which takes a much closer look at some “mouse-model” autism research by Columbia University researcher, Dr. Mady Hornig.

Before you “dig in” to this one, here’s some nice mice, mostly just because they are fun.

NARF!

Rain Mouse?

Tingling Mouse Tale

Fools - Gold: redux

Did I hear that gold salts cure autism?

Nightmare at Columbia U: Return of Rain Mouse

Update - Nightmare at Columbia U: Return of Rain Mouse

Brief descriptions, you can read ‘em
Then just click through to see ‘em
In Daylight Atheism’s
Pseudoscience Museum

The 40th meeting of the Skeptics’ Circle is up (yep 40th), and features a great observatory-turned-museum tour. Read up!