Wednesday, October 31, 2007

Rebuttal of Israel's Response to "School of Shock"

Matthew Israel of the Judge Rotenberg Center has been posting a link to his response to Jennifer Gonnerman's article titled "School of Shock." This is a rebuttal of said response.

Every surgical, dental or medical treatment involves discomfort, risks or costs on the one hand, and expected benefits on the other. For most persons a reasonable approach is to weigh the discomfort/risks/costs against the potential benefits in deciding whether to undergo or approve the treatment.
There's a clear difference between the JRC's "treatment" and surgical, dental or medical treatment. First of all, infliction of pain is not a means to an end in any of the analogies mentioned. Pain is simply a side-effect of the treatment. Furthermore, in each of these cases, measures are taken to reduce discomfort. That's what anasthesia is for! So the analogy is poor.

I'm leaving aside whether the behaviors "treated" are true medical conditions in all cases, and whether the "treatment" itself is medical.

In the case of certain treatments, however, there are some persons who, for religious or philosophical reasons, are unwilling to weigh the negative aspects of those treatments against the potential benefits. These persons view the treatment in question as Wrong with a capital “W”, regardless of the potential benefits the treatment might produce. For example, Christian Scientists oppose the use of medical interventions, and Scientologists oppose the use of psychiatric drugs, regardless of what potential benefits may ensue.
What is this irrelevant nonsense? I'm picturing an immate of the JRC objecting to being tortured for "philosophical reasons." Is he serious?

Opponents of behavior modification treatment that involves aversives(sometimes referred to as “aversive therapy”) are similarly unwilling to weigh the discomfort, risks or costs associated with aversives against the potential benefits—even when those benefits could be lifesaving, life-improving or life-extending. Such persons prefer to brand aversives as “Wrong,” refusing to recognize them as part of a relatively new behavior modification treatment procedure2, and many of them sometimes do whatever they can to prevent anyone else from using them. It is clear from Ms. Gonnerman’s article that she is one of those persons.
Here I'm going to have to say that Mr. Israel is using "aversives" as a euphemism for torture. At a different time we can discuss "aversives" as they are used in behavior modification. For example, Lovaas recommends slapping a child on the rear and yelling "No!" Many of us find this in itself objectionable, but I don't think this is what we're talking about right now.

Torture is defined as "any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person for such purposes as obtaining from him or a third person information or a confession, punishing him for an act he or a third person has committed or is suspected of having committed, or intimidating or coercing him or a third person, or for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity" (Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, 1987).

Allowing the Judge Rotenberg Center to exist would appear to be in violation of international law under this definition. If the JRC immates were Al-Qaeda terrorists instead of the developmentally disabled, I'm sure Amnesty International would be on the case sooner than you could say "Abu Ghraib."

Ms. Gonnerman is so intent on indicting the Judge Rotenberg Center (“JRC”), the only special needs school in the country that offers this form of therapy, that she violates the normal journalistic ethics of presenting both sides of a controversial issue. Out of a total of 265 column inches that her article occupies, only 15 inches (6% percent of the article) present any of the benefits of JRC’s treatment. Even those few accounts of parents (characterized as “desperate parents”) or students who speak positively about JRC are presented with snide comments, disparaged by unfavorable observations or reported in the least favorable light possible.
Here Mr. Israel is making the common mistake of confusing journalistic balance with "equal time." This is actually a big problem in science reporting, where fringe ideas are often portrayed as being on equal footing with accepted and tested theories (source).

Summary

Matthew Israel's response to "School of Shock" contains several false analogies and demonstrates a lack of understanding of certain concepts. Hence, it adds little value to any discussion about the need to stop torturing people. Perhaps if we were to strap one of those JRC backpacks to Mr. Israel, and we were to administer a shock every time he comes up with a response of this quality, such responses might improve in time. (I'm of course not serious about that last part.)

Saturday, October 27, 2007

Dr. Adams: Is there a paper in the horizon?

Back in June, 2006, Dateline NBC did a story titled The unorthodox practice of chelation which was primarily about a small double-blind trial on chelation therapy that Jim Adams and colleagues had designed. The following is an excerpt of the interview where Dr. Adams is asked about publishing potential negative results of the trial.

John Larson: What happens in the end, after all this hard work? If you find that there really is no relation between mercury and autistic behavior. Will you be disappointed?

Jim Adams: Disappointed, yes. But whatever way it turns out, we’ll report it. If it doesn’t help, we’ll report it. And if it does, we’re gonna report that, too.
When were the results expected? End of 2006.

Jim Adams predicts he'll have the final results of his study by the end of the year, and we'll have them first, here on Dateline.
Whatever flaws the trial might have had, it is worrisome that this much time has elapsed since the results were supposed to be made available either to the media or in the form of a paper. I don't know the reasons for the delay. Maybe there are valid justifications, maybe there aren't. D'oC over at Autism Street already discussed the delay back in June.

There are surely ethical questions as to whether such a trial should be done in the first place. But it seems to me that more serious ethical questions are raised by a failure to publish results.

Why do I say this? First, there's a general issue of scientific ethics. Imagine what would happen if researchers had the habit of sitting on results they don't like. The literature would be filled with self-selected results and random noise beyond what would be expected by mere chance.

Second, suppose the study had found there are therapeutic effects to chelation therapy. It would appear to me that the sooner the results are published, the sooner bigger and better replications of the study could be carried out to identify responders, and the sooner children could be treated.

Third, suppose the study determined there are adverse effects to the treatment. Considering the popularity of chelation therapy, it would certainly be wrong to withold this kind of information.

Is it plausible that chelation with DMSA was found to have adverse effects? Yes, in fact, a trial of DMSA with rats had found that, in the absense of lead intoxication, it could contribute to cognitive deficits (source).

Additionally, even though a paper has not been published, preliminary results from the trial are known because of presentations Jim Adams has done, e.g. Preliminary Results of 3rd DMSA Study (2007).

Dr. Adams compares a group receiving 7 rounds of DMSA vs. another getting 1 round of DMSA. In a global impression scale, 8% of the children getting 7 rounds are found to be doing slightly worse or worse vs. 0% of the children who got 1 round of DMSA. Of those who got 7 rounds, 87% are found to be doing slightly to much better vs. 84% of those who got 1 round. In the "No Change" category we find 17% of children who got 1 round vs. 4% of those who got 7. (You'll note that those percentages don't add up, but that's how they are reported in the presentation.)

This brings up a question as to whether about 8% of the children suffered adverse effects after only 7 rounds.

Dr. Adams also finds that DMSA increases excretion of potassium and chromium, and that it raised glucose and triglycerides.

Wednesday, October 24, 2007

Reptilian Shape-Shifting Alien Takes Over Lenny's Body

There's an interesting discussion over at EOHarm. It started when Lenny Schafer posted the following.

Hello,

I have inquiries along the lines of this letter from a Schafer Autism Report reader. Most of the explanations I can come up with sound a little weak.

Have any EOHarm list participants seen anything new from our side to help explain the question. I am looking for a response to put in the SAR. I am sure many of my 20,000 readers would like to some sort of explanation.

Lenny


Dear Mr Schafer,
Shouldn't we be seeing a downturn by now in the rate of diagnosed autism now that thimerasol has been removed from all childhood vaccines in California for a few years now? Do you know what the proponents of the theory have to say on the matter? I was dismayed to see the news item in today's report about the most recent numbers from the DDS.

Puzzled in Mtn View.
(EOHarm message #67007)

Fellow EOHarmers explained that it's not just thimerosal in vaccines. There are other things going on with the environment. But Lenny countered that the thimerosal hypothesis was supposed to be the strongest hypothesis, not a marginal part of a general environmental hypothesis.

The strongest hypothesis we have out there for the cause of autism is the Mercury Hypothesis. This is not the Mercury and Everything and the Kitchen Sink Hypothesis. Nobody every said it was only mercury, only that it's the best suspect. The mercury is mostly out of vaccines and we should have seen some drop, not increase in autism if the Mercury Hypothesis carries weight, I would think.
(EOHarm message #67018)

It was then explained to him that thimerosal is still in the flu vaccine, that trace amounts are still there, etc. He wouldn't budge. After all, if the "epidemic" of autism was supposed to be caused by an increase in the thimerosal dose per child in pediatric vaccines, why wouldn't a substantial decrease in the dosage reverse the epidemic?

Yes, yes. But there should still be some drop.
(EOHarm message #67034)

EOHarmers tried everything. They said that any dose could sustain the epidemic; that perhaps only a decrease in severity would result. Some decided it was time to blame a different type of vaccine; maybe Wakefield was right after all. They talked about the importance of keeping the faith. Finally, someone said, "how do you know thimerosal has really been removed?" But it didn't really work.

If true, this would be the best explanation of them all, not to mention the biggest travesty. It shouldn't be too hard to test this. Random analysis of vaccines.
(EOHarm message #67038)

He thought about it further and came back with the kind of whopper that is only ever overheard in skeptical blogs.

This is another important missing element in support of the mercury hypothesis: where are the whistle blowers? Even amongst the worst thieves and scoundrels, there are a few who eventually seek to tell the truth and find atonement for their sins. Where are they? (Rhetorical question).
(EOHarm message #67113)

When asked why the question was rethorical, he answered as follows.

The question, "wherefore art thou whistle blower" is posed rhetorically because the obvious answers are unsatisfactory to the mercury hypothesis:

1. They are still in hiding after so long.

2. They don't exist.
(EOHarm message #67125)

Lenny's a goner I'm afraid. The Illuminati have him now. Well, that or, you know, something called cognitive dissonance finally kicked in.

Either way, what do you think Lenny Schafer should say to his readers? Let's help him out.

Monday, October 22, 2007

When the Mainstream is Mistaken: The Case of ABA

As regular readers might have noticed, Natural Variation is, for the most part, what one might call a "skeptic blog." This, however, doesn't mean that I generally bow to scientific authority, and on occasion you will see me question mainstream views, if I feel there are rational arguments that can be advanced to question such views.

This time I will question the view that ABA/EIBI is an evidence-based autism treatment. Let me start by quoting what major mainstream authorities think of it.

Behavioral training, including communication development, has been shown to be effective in reducing problem behaviors and improving adaptation.

There is a growing body of evidence that intensive early intervention services for children in whom autism is diagnosed before 5 years of age may lead to better overall outcomes.
(American Academy of Pediatrics, 2001)

Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning and appropriate social behavior.
(The United States Surgeon General, 1999)

Impressive, right? I will summarize reasons why some of us feel these statements were premature and not entirely supported by the data. Most of this has already been noted by Michelle Dawson and Morton Ann Gernsbacher, who have done a remarkable job of advancing science-based criticisms of ABA.

  • There are no randomized trials of ABA (with or without blinded assessments) demonstrating its broad effectiveness against "eclectic" management approaches.

  • One randomized trial of ABA (Smith, Groen & Wynn, 2000) was conducted to "address criticism of previous research and to increase methodological rigor." It compared a group treated with Lovaas-style ABA against a group receiving parent-instructed treatment. Only 13% of the children in the experimental group achieved "best outcome" (mainstream placement without support). No statistically significant group differences were found in either of two language scales. The paper reports a difference, but there was an error in the data analysis (Smith, 2001). No differences were found in socioemotional functioning or in adaptive functioning. Marginal differences were found in other measures.

  • There are controlled trials, such as Howlin et al. (2007), which have not found EIBI to be effective compared to autism-specific nursery provisions.

  • Adult outcomes of children who had received Lovaas-style ABA have not been reported in the peer-reviewed literature. Children from the experimental group of Lovaas (1987) must now be in their 20s and 30s. What would be the point of short-term gains if, hypothetically, adult outcomes do not differ from those of autistics who did not receive intensive interventions?

Specific Criticism of Lovaas (1987)

It is probably fair to say that the reason ABA gained mainstream acceptance was the widely reported "recovery" rate of 47% resulting from Lovaas (1987). In fact, the Surgeon General of the United States makes reference to it. The methodology of this landmark paper has been widely challenged, however.

  • There was no randomized assignment into groups.

  • Assessments were not blinded.

  • Male-female ratios in the experimental group and control group 1 differed from the ratio normally reported for autism (Boyd, 1998).

  • IQ assessment tools differed between intake and follow-up.

  • It is highly improbable that the reported ranges of intake IQ in Lovaas (1987) match the experimental group average IQ of 63 (source). In fact, the ranges are inconsistently reported.


Comment

There is a substantial body of Level-II-1 and lower quality evidence that suggests EIBI is an effective treatment approach. However, since there exists Level-I, Level-II-1 and other evidence that EIBI is not terribly effective, and also considering the lack of adult outcome studies, the statements by the Surgeon General of the United States and the American Academy of Pediatrics seem premature. Indeed, the trial which appears to be the most methodologically rigorous to date (Smith et al., 2000) was largely unsuccessful. The statements are also unfortunate because lowering standards of evidence could allow quackery in the door, and could result in us having to deal with "evidence based" woo.

Saturday, October 20, 2007

The Importance of Acceptance

I believe that accepting autistic people is simply the right thing to do. It's not something you should consider doing just to make a child "get better" or any medicalized thing of that nature. That said, in a prior discussion the question came up as to whether acceptance might be beneficial to autistic children, so I decided to research it. There is not a lot of autism-specific research on the issue, but I did find there is a large body of research on acceptance and its effects on general population children as well as disabled children.

In the general population it has been found that parental acceptance correlates with better academic performance (Hahn, 1980), optimal self-concept development (Litovsky & Dusek, 1985), self-worth and self-competence (Ohannessian et al., 1998), etc. Self-worth has been found to correlate to perceived competence in domains important to parents (Killeen, 1993).

In children with "disruptive behavior disorders", parent-child attachment has been found to correlate with lower levels of aggression and social stress (Ooi, 2006). The self-esteem of children with learning disabilities have been found to be associated with parental acceptance (Morvitz & Motta, 1992).

On a related note, I've learned there's something called Acceptance and Commitment Therapy (ACT). In randomized trials it has been found to be as effective as the dominant form of psychotherapy, CBT, in the treatment of depression, anxiety and problems of that nature. Its mechanism of action appears to be different to that of CBT (Forman et al., 2007). There has been a trial of this type of therapy with parents of autistic children (Blackledge, 2006), but it should be stressed this trial was not randomized. There is also a non-randomized trial of this therapy as a treatment of Social Anxiety Disorder (Dalrymple & Herbert, 2007).

I don't have any comments beyond that. I just wanted to report what I found, but I'd appreciate any personal experiences, or insight from readers with expertise on the topic.

Thursday, October 18, 2007

Open Thread

Discuss anything that's on your mind, or post information of interest.

Tuesday, October 16, 2007

Raun Kaufman: Completely Recovered or Success Story?

I've come across some information which leads me to put Raun Kaufman on the spot. Apparently he was diagnosed at the age of 18 months. That was over 30 years ago. Isn't that rather early a diagnosis for the time? By the age of 5 he's said to have "emerged" from autism. We're in 2007 now; early diagnoses are quite common and have been studied. It turns out that it's not that unusual for children to lose age 2 diagnoses, and there's little data regarding what predicts this. Anywhere from 12% to 19% of children diagnosed at age 2 will be found to not meet ASD criteria some years later (Turner et al., 2006; Kleinman et al., 2007). Sorry Raun, but those are the facts.

But maybe he didn't lose his label at 5. He simply "emerged." Still, Raun Kaufman is unusual and generates interest because he's the only adult (that I know of) who inequivocally states he's completely recovered from autism. I've encountered adults who say they might be slightly off the spectrum now, but they tend to be ambiguous about it.

How does Raun Kaufman differ from any of Kanner's "success stories" as described in Kanner et al. (1972)? It can't be that they didn't graduate from college or didn't have jobs.

Does it matter whether we call it "complete recovery" or "success story"? I think it matters a little. Losing membership in a group is different to being a successful member of the group. For example, it will probably be quite unusual if a woman becomes president of the US. But I don't think Hilary Clinton will stop being a woman if she achieves this.

Don't get me wrong. I think it is important for science to study what might have helped Raun have a successful outcome. Some clues are already there.

Although advised to institutionalize Raun, his parents, authors/teachers Samahria and Barry Neil Kaufman, instead created an innovative home-based, child-centered program in an effort to reach their son.

I'm convinced this sort of recommendation Raun's parents got is a major cause of poor adult outcomes reported in the literature. It's a self-fulfilling prophecy if you will. I'd like to see stronger warnings against early institutionalization. I believe this is more important than saying "give me money to recover your child."

I don't doubt the parallel play, joint attention, presuming competence, and acceptance (even fake acceptance) helped somewhat.

However, I don't like a lot of the discourse used by the Autism Treatment Centers of America. It's medicalized. It claims to give "hope" but instead misleads with erroneous information, such as suggesting that poor outcomes in autism are basically a given under normal circumstances.

Monday, October 15, 2007

Gallup & Yazbak: "Prevalence is 1 in 67"

Raymond W. Gallup & F. Edward Yazbak have posted an analysis titled "When 1 in 150 is really 1 in 67." As you can imagine, they did not survey children in order to arrive at a new prevalence number of 1 in 67. They estimated it as follows.

  1. The CDC has reported that the prevalence of autism among children born in 1994 is 1 in 150.
  2. The administrative prevalence of autism among 6 year olds, as reported in IDEA, has increased 124% (factor of 2.24) from 2000 to 2006.
  3. Therefore, they argue, the prevalence reported by the CDC must actually be 1 in 67 for children born in 2000, if adjusted accordingly.

Anyone see why this methodology does not hold?

For this analysis to hold, IDEA ascertainment would have to be at least roughly equivalent to CDC ascertainment. It's not a matter of "not believing the statistics collected by the U.S. department of education" as the authors contend. I believe them. I just don't think they are counting all autistic children, by far. But I do think they are getting better at ascertaining autism.

In 2000, the prevalence of IDEA autism among 6 year olds was 0.23% (source, table B2C). This is 2.89 times less than the CDC prevalence reported for children born in 1994. So for every 3 autistic children, IDEA missed 2. Of course, it's unlikely they missed most of them. They were probably served under other categories, as demonstrated by Shattuck (2006).

Could it also be that the IDEA category can be changed after the age of 6? (Note that in IDEA a child is in one category or another, not multiple ones simultaneously.) The IDEA prevalence of autism among 11 year olds in 2005 was 0.47% (same table), more than double that of 6 year olds in 2000. Obviously, half of the autistic 11 year olds, as recognized in 2005, must have been served in other categories in 2000.

So Gallup & Yazbak's analysis is flawed in regards to using the IDEA prevalence of 6 year olds in 2000 to extrapolate the results of a survey done recently on children who are now older. That's just a demonstrable flaw of the analysis. I don't believe the analysis methodology is valid either way.

Sunday, October 14, 2007

Kev: Any way you may reconsider?

Briefly, John Best Jr. has once again made an appalling impersonation of Kev's daughter (won't link to it) and of course, this has made Kev very upset. I know I would be. Kev says he's decided to stop blogging about autism in order to prevent his family from being the victims of John's immature and reprehensible behavior.

John makes Jerry Kartzinel look like a tolerant angel from heaven.

This is one of the reasons many of us blog anonymously or pseudonymously. (I'd link to other examples, but they would be in Kev's blog.) We have to be careful to even use our kids' real names in this sort of environment.

Making comparisons is probably not nice, but has this sort of thing ever been done to anyone in the EOHarm mailing list, for example? Would they happen to care at all about the behavior of one of their own?

Kev's blog (LB/RB) is perhaps the most popular autism blog in the web. It's very neurodiversity-friendly, and it discusses science in a rational manner, without the usual nonsense you see elsewhere. Losing LB/RB would be a major loss to the autism and autistic communities.

I think it would be awful if John is allowed to win this time. I realize Kev has to think about his family first. I wish there's a way he might reconsider. I'd urge readers to send a message of support to kevleitch at gmail dot com.

And John, I know you're reading. Let me appeal to your better nature, if there is such a thing in you. Retract those posts.

Saturday, October 13, 2007

How Did Neurodiversity Win You Over?

Quick informal survey: How did neurodiversity/acceptance win you over? This question goes for parents, those on the spectrum and anyone else who sympathizes with the philosophy.

Clearly, we didn't all start out embracing the concept or even being aware of it. I think this is true of almost all parents, even those parents like me who are themselves on the spectrum.

For me, at first, I think it was interacting with others on the spectrum and reading what they had to say, and even arguing with them. Much has happened since then, and my views have continued to evolve, but in the very beginning, I think that was key.

In my view, those in the neurodiversity movement tend to be flexible and critical thinkers, who are ready to revise their views in light of new indisputable information. This is a generalization, of course, but a strangely consistent one if you consider the polarization of skeptical thinkers vs. anecdotal thinkers in the autism community. I can't explain it.

It also appears to be the case that parents go from being curebies to embracing acceptance, but I've not once heard of a parent going the other way.

Wednesday, October 10, 2007

A Dose Of Real Autism Reality

It seems to me that many parents (and even some professionals) in the autism community are unaware of fundamental facts about autism. I cannot help but arrive at this conclusion when I witness factual statements such as "there is no cure for autism" twisted into mistaken or unsubstantiated statements like the following.

  • The bastards are telling us that our kids will never get better!
  • Loss of label in autism is so miraculous that some innovative cure must have made little Timmi recover.
  • My child would not have skills X, Y, and Z if it weren't for [insert woo].
  • My 2 year-old child will never be able to do X.
  • My child will necessarily end up in an institution.

When we deal with flawed premises of this nature, rational discussion obviously becomes very difficult. That's why I want to make this post a sort of all-purpose summary of what the science tells us in regards to developmental progress, adult outcomes, loss of label in childhood, speech, institutionalization, and shifts in parental beliefs. I will discuss factors that seem to be predictive of outcome, but don't expect any magical formulas or guarantees from me. I can only speak of possibilities and I will only report what the data tells me. I will not sugar-coat what the research says.

As always, if you find that I failed to include some relevant data, or if something I said is inaccurate, feel free to let me know in the comments section.

Developmental Progress

Recently there was some publicity sorrounding a study by Paul Shattuck which found that autistics "get better" in average (source). This type of finding is not new, however.

Even early papers by Kanner show that autistic children tend to make substantial developmental progress as time goes by. There are several other published findings as well.

Findings from Harris et al. (1991), for example, "support the notion that young children with autism can make very significant developmental gains."

Tager-Flusberg et al. (1990) found that language acquisition in most autistic children followed the same developmental path as that found in children with Down Syndrome, and that of normal children as reported in the literature.

Harris et al. (1990) found that all autistic children in the study made normative progress in their rate of language development.

Piven et al. (1996) reported "significant change over time in autistic behaviors, generally in the direction of improvement" in high-IQ autistic adolescents.

Charman et al. (2004) found that autistic children had "encouraging developmental progress" over a 1-year period, although no change in "symptom severity as measured by the Social Communication Questionnaire."

Of course, there is such a thing as "regression" and there are developmental plateaus, but these are the exception rather than the norm, and they will not necessarily persist indefinitely.

Adult Outcomes

The first adult outcomes reported in the literature can be found in Kanner (1971) and Kanner et al. (1972). The 1972 paper details the case histories of 11 (actually 13) of 96 autistic adults Kanner considered "success stories." The paper contains some discussion of predictive factors for a successful outcome, such as the presence of some expressive language before the age of 5, and effort spent to "compensate for the lack of inherent sociability" when the individuals were in their middle to late teens.

The only environmental factor Kanner found significant was a total lack of institutionalization. I see this as a key factor, and it would be difficult to do it justice with a risk ratio. Lack of institutionalization was practically a requirement for a successful outcome. On the other hand, from Kanner's 1971 paper it would seem that institutionalization from an early age practically ensured a "dismal" outcome.

There have been other adult outcome studies since then, with varying results. For example, Howlin et al. (2004) found that 12% of adults had "very good outcome" and another 10% "good outcome", with the majority (58%) having "poor" or "very poor" outcome. Billstedt et al. (2005) found that autistics diagnosed in 60s, 70s and 80s had worse outcome than previously reported, with only 3% achieving independence, and 78% having a "poor outcome."

A recent adult outcome study reports that half of the autistic adults had a good or fair outcome, and 46% had poor outcomes (Eaves & Ho, 2007). The authors indicate that "current young people had more opportunities" and thus better outcomes were expected. I would venture a guess that one of those opportunities was the opportunity not to be institutionalized.

Some factors in outcome, such as baseline IQ or symptom severity, are usually discussed in these types of outcome studies.

Szatmari et al. (1989) studied the outcome of "non-retarded" autistic adults, and found that 4 of 16 (25%), a "surprising number", had a very good outcome and could be considered "recovered." An interesting finding from this study was that symptom severity was not predictive of outcome.

Outcome studies generally use various standard measures to determine if an outcome is good or poor. Ruble & Dalrymple (1996) questions the traditional view of outcome and suggests that some good outcomes are sometimes "invisible" to traditional measures. It also found that the parents of autistic adults who were doing well had pushed for integration and mainstreaming.

You might have heard neurodiversity advocates promote the notion that "presuming competence" is beneficial. There is actually some evidentiary support for this if you look at Donohue et al. (2000), which is not autism specific, but is referred by Ivey (2007), a survey of teacher expectations of outcome in autism. The following is quoted from its summary.

Research shows that when the significant people in a child’s life do not believe that he or she has capability to achieve an outcome, it is unlikely that the outcome will be realized. For example, if a teacher feels that a student has
social obstacles, then their perceptions may increase the undesirable behavior and the student may see him or herself in that light (Donohue, Weinstein, Cowan, & Cowan, 2000).

The environmental factor that seems to be of interest to medical researchers is, of course, treatment. Unfortunately, there are no adult outcome studies that could tell us if modern treatments, particulary early intensive behavioral intervention (EIBI), are predictive of a good outcome. The evidence is rather ambiguous. To take an example, you have Howlin (1997) which tells us that "appropriately structured programmes for education and management in the early years can play a significant role in enhancing functioning in later life." But later the same author, in Howlin (2003), states that "despite claims to the contrary, there is little evidence that very early, intensive interventions can significantly alter the long-term course of the disorder." It would be of interest to know, for example, how the experimental group of Lovaas (1987) is doing, now in their 20s and 30s (even if the group was not representative) but unfortunately no one has taken the time to document these adult outcomes in the peer-reviewed literature thus far.

Loss of Label in Childhood

It seems obvious that the earlier the diagnosis, the harder it is to predict if the diagnosis will hold some years later. There are some studies that support this view, such as Turner et al. (2006) which found that only 88% of children with autism or PDD-NOS diagnoses at age 2 were found to be in the spectrum at age 9. See also Sutera et al. (2006) and Charman et al. (2005).

While loss of label in childhood is rare, it's obviously not as miraculous as some claim. A gap in the science is that nothing is known about the adult outcomes of autistic children who lose their label at a young age.

Speech Development

Turner et al. (2006) tells us that 88% of children diagnosed with autism or PDD-NOS at age 2 could demonstrate some functional language at age 9. However, only 32% were able to engage in a conversation.

Kobayashi & Murata (1998) found that 48% of a sample of 187 autistic adults had good or very good speech.

Speech delay has been found to be non-significant in autistic children with normal intelligence, i.e. their outcome appears to be no different to those with a diagnosis of Asperger's (Calhoun, 2001).

Institutionalization

It is important to realize that institutionalization of developmentally disabled persons has been in decline in recent decades, probably in large part due to the deinstitutionalization movement.

Krauss et al. (2005) reports that 63% of autistic adults did not live at home with their parents. Of those, the majority (73%) lived in a community residential programme. About 17% had a semi-independent living arrangement. Only 3% lived in an institutional setting.

This is consistent with the latest data from California DDS, where we find that at least 66% of adults in the system live at home or independently, and no more than 4% live in institutional care facilities (source).

Currently about 10 in 10,000 persons in California are registered with CDDS and do not live at home or independently. There is a slight downward trend in this proportion. I would estimate that autistic children diagnosed today in California have a relatively small chance (5-10%) of not living at home or independently as adults, due to the trend in institutionalization and the broadening of the spectrum. To put it in perspective, I think they have better odds of "recovering" than of being institutionalized.

Parental Beliefs

According to King et al. (2006), expected changes in parental worldviews over time include positive adaptations concerning views on life and disability, "and an appreciation of the positive contributions made by children to family members and society as a whole." I suspect not all parents undergo these worldview adaptations, however. Some will probably oppose acceptance to the bitter end.

Sunday, October 07, 2007

More evidence that the impact of biomed, if any, has been limited

[ERRATA 10/13/2007: Based on commenter feedback, I have changed the title from the strongly worded "More Evidence Of The General Ineffectiveness of Biomed". A few words have been inserted in the post in relation to this clarification. The term "high functioning" is sometimes used to indicate that a child would no longer be eligible for developmental disability services.]

What I want to do in this post is verify, using actual data, whether claims to the effect that biomed is producing broad results hold water. I think administrative data is adequate to test this belief, as I will explain.

So what is it that biomed peddlers are generally claiming? First, they are telling us that biomed is recovering autistic children by the "thousands." They also tell us that those of us who do not experiment with our children using biomed will soon repent, that we're guilty of child abuse, and so forth. They've been saying that for years actually.

Regular troll to the LB/RB blog, 666sigma, tells us that most of the autistic children where he lives have pretty much recovered, and the ones who are now mainstreamed without autistic traits are precisely the ones who are doing biomed (source). Let's put aside for a moment 666sigma's confirmation bias, and consider what would happen if what he says is true.

Now, keep in mind that about 74% of autistic children in the US are currently subjected to alternative medicine (Hanson et al., 2007). If biomed were generally and broadly effective, it follows that a significant number of autistic children must constantly become high functioning, if not lose their labels altogether.

I think any such effect should show up in California data. Suppose a child is born in 2001, is diagnosed with autism in 2004, and enters the CDDS system then. Your average parent in the US will naturally at that point Google their way to the biomed treatments of vogue. I would assume that by 2006 the child should be expected to be high functioning or recovered, right? This means that the child would lose their CDDS eligibility and would no longer appear in the report. It's important to realize that the state of California is very much concerned with CDDS caseload growth, to the point that in August 2003 a law was enacted (CA AB1762, W&IC 4512) with the explicit purpose of supressing this growth (source). The law requires the applicant to have three life-functioning deficits instead of just one. In fact, 2003 and 2004 saw more autistic individuals dropped from the system than any year prior, at least since 1999 (source).

Note also that CDDS reports are generally on clients with active status, and losing eligibility causes someone's status to become 'Closed' (source).

Thanks to David Kirby, who brought it to my attention, I happen to have data on caseload by birth year cohort from CDDS, as reported every quarter. We can check what happens to the caseload of autistic children born in 2001, for example. I actually went and made a graph of caseload for birth years 1999 to 2004, as reported each June from 2002 to 2007.



This graph shows that with each year that passes, the number of autistic children receiving services from CDDS born in any year between 1999 and 2004 does not drop, but instead continues to increase. The following graph, which might be clearer, illustrates what has occurred to the caseload of children born in 1999 specifically.



From these data we can conclude that autistic children born in recent years in California are not dying in significant numbers, are not moving out of the state in significant numbers, and I would also assert they are not recovering in significant numbers. There are some limitations to the data. For example, it could be argued that increasing recognition of autism is so relentless that it overshadows any recoveries, particularly those that occur before the age of 5 or 6. The data also seems to suggest that no treatment is effective, but in fairness, 40-hour ABA is probably a rare treatment in practice.

In all honesty, though, what we're looking at is the reality that autistic children are not going anywhere. The vast majority will always be autistic. I cannot have respect for parents who delude themselves into thinking some hogwash will magically turn their autistic children into non-autistic ones based on just-so stories they read on the internet.

Wednesday, October 03, 2007

ThreeLac Or How Biomed Is Getting Out Of Hand

ThreeLac is an alternative treatment for candida/yeast/fungal infections which seems to be receiving considerable attention as a biomed autism treatment thanks to Jenny McCarthy. I wouldn't be surprised if it soon overshadows other treatments currently in vogue, such as Chelation Therapy or Me-B12 injections.

ThreeLac is unproven, of course. There are no published studies on its effectiveness as it relates to any condition, never mind autism.

However, there is one "study" underway which purports to demonstrate its effectiveness as an autism treatment. I'm not going to link to its web page but it's easy to find if you're interested. It is not a controlled study, as you can imagine. It's reminiscent of the uncontrolled work Amy Holmes did in the early days of Chelation Therapy for autism. In any such uncontrolled "studies", you will find that the children "improve", some markedly. I would go as far as to say, frankly, that non-controlled treatment studies are worse than useless in autism for reasons that should be well known by now.

What caught my attention about the ThreeLack "study" was the "existing supplement routine prior to and during the study." It's jaw-dropping. The following is a selected list of existing supplements taken by some of the children in the study.


Child #2: Magnetic clay baths finished, transdermal DMPS – ongoing. Other supplements: H. Pheno, H Enzyme HN – Mult, H. Enzy – APF – gfcf, Zn monomethionine, Folic acid, Multicarotene, Co Q10, Black Currant, V E, Epson S cream, EFA, D Plex, B Complex, Eskimo oil, CLO flavored, Myelized A, PicMins, Custom amino acid base, LGS, 5-HTP, taurine, OPC – 100, Biotin-8, Sacro-B, L-carnitine. Parent's comments: "He likes to watch picture of books. His eye contact has improved. He sleeps 7-8 hours every day. He is gentle. He enjoys his life. He often smiles. So, we all enjoy peaceful life."

Child #3: No chelation listed. Other supplements: Carnosine, H. Pheno, H. Enzyme HN – Mult, H. Enzy – APF – gfcf, Zn monomethionine, Folic acid, Multi-Carotene, Co Q10, Black currant, V E, Epson S Cream, EFA, D Plex, B Complex, Eskimo oil, CLO, Myelized A, PicMins, Custom amino acid base, LGS, 5-HTP, taurine, OPC-100, Biotin – 8, L-Lysine. Parent's comments: "He can solve many questions of Science, Social Studies, Arithmetic, and Language. He likes to read Harry Potter. He is gentle."

Child #4: TD-DMPS finished June 2005. Other supplements: Ambrotrose, Arabinex, Ascorbic acid, Amino acid, Biotin, Black currant oil, calcium Citramate, Carnosine, Cod liver oil, Co-Enzyme Q10, DMG + Flonic acid, D Plex, EFA, Enzymes – NF, ZP, AFP, Eskimo 3 fish oil, Glutathione cream, Glutathione liquid, 5-HTP Tryptophan, L-Arginine, L-Carnitine, L-Glutamine, L-Tyrosine, Magnesium sulfate, Mercurious Virus, Monolaurin, Multi-carotene, N-Acetyl Cysteine, OPC-100, Pantethine, Pic-Mins, Pyridoxal 5 phosphate, RNA – Nerve Calm, RNA – Health Foundation, RNA – Stress Foundation, RNA – Mood Focus, Sac. Boullardii, Selenium, Transfer Factor, Vitamin A, Vitamin B-12, Vitamin B Complex, Vitamin C, Vitamin E, Zinc, Zinc Sulphate.

Child #5: DMSA, Clay baths, TD-DMPS, still in progress. Other supplements: Super Nu Thera, Vitamin C, TMG/Folinic Acid/B12, CoQ10, Amino Acids, Methylcobalamin shot, Enzymes, Glutathione, Milk Thistle, Cod Liver oil, Monolaurin, Pro-Bio Gold, Hemp oil, EP oil, Multi Mineral, Transfer Factor, Zinc. Parent's comments: "Improved computer skills, improved handwriting and spelling. Has mastered tying shoes on shoe board."

Child #7: TD DMPS, ongoing. Other supplements: Lipoceutical Glutathione, Multi-vitamin, Multi-mineral, Buffered Vitamin C, Zinc, Transfer Factor, Amino Acid blend, L-Carnitine, Taurine, MB12 shots & Folinic Acid, Cod Liver oil. Parent's comments: "Toilet training improved (B.M.'s are the best)."

Child #8: Magnetic Clay baths and Transdermal DMPS gel ongoing. Other supplements: Vitamin E w/Tocotrienols 400I.U., B-Complex #3 caps, Multi-Vitamin Pro-Support, Ascorbic Acid, Magnesium Malate, Zinc Monomethionine, Calcium Citramate, Pic-Mins (multi-minerals), Epsom Salt Cream, FlorVital Iron liquid, Cod Liver oil, CoQ10, BAM (Amino Acid base), L-Carnitine, Glycine, TMG w. Folinic acid & B12, L-Theanine, Melatonin, Sacro-B, O.P.C. (oligomeric Pranthocyanidin), Lipoceutical Glutithione, Methyl-B12 shots, Enzymes: No-Fenol, Zyme Prime, AFP Peptizyde. Parent's comments: "He is much better. Overall, a much calmer boy."

Child #9: Oral DMSA, two rounds only during study. Daily application of TTFD chelating cream. Other supplements: Essential fatty acids, Multi-vitamin, amino acids, Acetyl l-carnitine, Vitamin C, B6, Magnesium, Calcium, Vitamin E, Transfer Factors, Methylcobalamin injections, Glutathione lotion. Parent's comments: "She has improved well in areas of sociability and cognition. Sociability is 60% improved, irritability is 20% improved and academic is 60% improved."

Child #10: Oral DMSA, 3/2005 – present. Other supplements: Pic-Mins, zinc monomethionine, selenium picolinate, magnesium malate, N-acetyl cysteine, L-carnitine, OPC-100, carnosine, taurine, multicarotene, CoQ10, glycine, biotin, folinic acid, Kirkman Nu Thera Everyday Companion, Kirkman EFA, amino acid mix, B-complex, vitamin A, vitamin B6 (P5P), vitamin C, vitamin E, black currant oil, fish oil, cod liver oil, glutathione, B-12 injections, T.A.P.S. (liver support), TTFD.

Child #11: DMPS transdermal prior to starting ThreeLac and ended in May, 2005, changing to clay baths. Other supplements: Micel A drops, Wellness LipoCeutical Glutathione, Black Elderberry extract, Cod liver oil, Eskimo oil, Transfer Factor, NAC, Multiple vitamin Pro Support, Magnesium malate, Selenium, Zinc monomethionine, Pic-Mins, ASD-Plex, Nu-Thera Everyday Companion, Amino acids, H. No-Fenol, H. HN-Zyme Prime Multi, H. Enzyme AFP Peptizyde cfgf, Kirkman vitamin C candies, Balanced Omega combination, Black currant oil, Hydrosoluble CoQ-10, Multi-carotene, Vitamin E, Taurine, L-Carnitine, O.P.C., Biotin-8, B-Complex #3, Folinic acid, Empsom salt cream, Zinc Sulfate cream, Methyl-B12 shot, Melatonin. Parent's comments: "She was off ThreeLac and all supplements completely for 8 weeks, and her diarrhea (of > 1yr) never returned. She also showed no regression and her behavior is that of a recovered autistic child (no behavioral symptoms). She is now able to tolerate moderate amounts of sugar, and we just started her on 1 packet/day maintenance and the rest of her supplements ½ dose. I think she's completely normal except for needing to stay on the diet and supplements. She still has a bit of a speech delay, but improved so much that it doesn't get in her way of making friends. She's one of the friendliest kids in her class. If you were to observe the class and guess which one is autistic, you probably wouldn't guess (my daughter). She's 90% potty trained."

Child #12: TD-DMPS ongoing. Other supplements: Custom amino acid, Carnosine, Buffered C, DMG w/ B-12 + folinic acid, Pic-Mins, OPC-100, Magnesium Malate, Transfer Factor, Co-Q10, LGS, Selenium Picolinate, Black Currant Oil, Folinic Acid, Sacro-B, Calcium Citramate, Vitamin E, B-Complex, Biotin-8, Zinc Monomethionine, Glycine, Micelized Vitamin A, Cod Liver Oil, Omega Brite, RNA, GABA, Pantethine, LipoCeutical Glutathione, TTFD cream, Glutathione cream, Epsom salts cream and baths. Parent's comments: "His imagination skills have improved. The ThreeLac has made a huge improvement with his stools. Mouthing has improved 100% and lining up objects has improved 50%."

Child #13: TD-DMPS since 12/6/2004, ongoing. Other supplements: Transfer Factor Advanced, Trace Mins, Pic Mins, Zinc Picolinate, Vit E with Tocotrienols, Evening Primrose oil, Black Currant, CoQ-10, Cod liver oil, Eskimo oil, Magnesium Malate, L-Tyrosine, D-Plex, Customized Amino Acids, Selenium, Biotin-8, B Complex #3, MB-12, Melatonin, 5HTP, GABA, Buffered C Powder, Calcium C, Taurine, Multi Vit Pro Support. Parent's comments: "Fine motor skills 50% improved. He is almost 100% toilet trained (90% improved)."

Child #16: Clay baths – ongoing. Other supplements: AFP-Peptizyde, B-12 shot, Black Currant Oil, Carnosine, Cod Liver Oil, Custom Amino Acid Base, DMG w/Folinic Acid, D-Plex, EFA, Epsom S Cream, Eskimo-3 Oil, Hydrosoluble CoQ-10, L-Carnitine, L-Glutamine, Lipoceutical Glutathinoe, L-Methionine, Lycopene, Magnesium Malate, Micel-A, NAC N-Acetyl-Cysteine, No Fenol, Nu-Thera/Everyday Companion, Pantethine, Pic-Mins, Super Nu-Thera, Taurine, Vital-10, Vitamin E w/ Tocotrienols, Zinc, Zinc Monomethionine, Zyme Prime. Parent's comments: "He went from being mostly non-verbal to a "chatter box." He enjoys talking and singing. He has been diagnosed with apraxia of speech and as a result it's not always easy to understand what he's saying...but it's a huge improvement over where he was at when we started."

Child #17: Clay baths – ongoing. Other supplements: 5-HTP, AFP-Peptizyde, B-12 shot, B-Complex w/ CoEnzymes Pro, Black Currant Oil, Black Elderberry Extract, Cod Liver Oil, DMG w/ Folinic Acid, Epsom S Cream, Eskimo-2 Oil, Floradix, Glycine, Hydrosoluble CoQ-10, L-Carnitine, L-Glutamine, Lipoceutical Glutathione, L-Phenylalanine, Lycopene, Magnesium Malate, Melatonin, Micel-A, NAC N-Acetyl-Cysteine, No Fenol, Nu-Thera/Everyday Companion, O.P.C.-100, Pantethine, Pic-Mins, Super Nu-Thera, Taurine, Vital-10, Vitamin E w/ Tocotrienols, Zinc Monomethionine, Zyme Prime. Parent's comments: "She has always been a "chatter box." We have seen amazing changes in her as well. On her annual IQ tests she scored 39 points higher than last year... and 49 points on the other IQ test. If she was reevaluated today, the psychologist expects that she would lose her diagnosis."


Damn. I hope the reason most children in the study take so many supplements is because the study self-selects for curebie parents. Additionally, I hope these kids make it through all that.

This reminds me of a supplement soup JB Handley was giving his kid, but I couldn't find the link to that.

Tuesday, October 02, 2007

Let's Help Out DAN!

It appears that Defeat Autism Now! can no longer use the DAN! acronym after a cease and desist claim issued by the Divers Alert Network (EOHarm message #65738.) Over at EOHarm they are saying that it's because of DAN!'s "success" (sure) but it's really because both organizations have a connection to HBOT.

That's too bad, isn't it? I thought it would be nice if we could help out DAN! get a new acronym for their organization. You know, something that is not too disimilar to the old DAN! acronym. Here are my suggestions.

  1. DAMN!
    Defeating Autism, Maybe, Not sure!

  2. DKAM!
    David Kirby, Arithmetic Master!

  3. NAD!
    Now Against Diversity!

Any other ideas?

Monday, October 01, 2007

Does Data Support Claim That Developmental Disabilities Will "Destroy The US"?

[ERRATA 11/24/2007: The year 2006 was mistakenly referred to as 1996 in a couple places.]

I presume most of my readers are pretty familiar with this sort of claim by now. For example, column writer Evelyn Pringle has proclaimed autism to be the "worst welfare disater in history" and further claims that "as more autistic children reach late adolescence, the need for out-of-home residential services is beginning to have a heavy impact on state budgets" (source.) When Mark Geier was interviewed by the conspiracy talk radio program Radio Liberty, he stated that if "we end up with one in six of them having brain damage, that’s fifty million Americans, we’re not going to be the number one country in the world anymore." He further suggested that "if we are not careful it’s going to destroy the United States" (source.)

These scare tactics are, of course, unsubstantiated. Note that it's not sufficient to point to the increasing administrative prevalence of autism, considering the very distinct possibility of diagnostic substitution and increasing recognition of various conditions. It's also not sufficient to point to the high costs of ABA therapy, for example, for the same reasons.

To determine if there is any merit to these claims, I think we need to look at some basic metrics, and that's what I intend to do in this post. I will use data going back to 1992 which may be requested from California DDS (CDDS). California population data is obtained from the California Department of Health Services.

Let us first look at trends in cognitive disability as a whole, by analyzing data on an aggregation of moderate, severe and profound mental retardation in the state of California as registered by CDDS. Mental retardation (MR) in CDDS is more of an assessment than a diagnosis. That is, all CDDS clients, including autistic clients, are assigned to a category such as "No MR", "Profound MR", "Unknown MR", etc. This categorization is presumably based on IQ testing. I am choosing moderate, severe and profound MR because I believe these categories would be "hard to miss" if you will, and it is unlikely that there's a recent trend of parents deciding to pursue CDDS services for these conditions where they would not have in the past. In other words, many of the caveats that would apply to the autism classification probably do not apply to these categories.

The following is a graph of the prevalence change in moderate, severe and profound MR from 1992 to 2006, as reported in July of each year.



As we can see, administrative prevalence of moderate, severe and profound mental retardation has been stable since 1992. The aggregated prevalence was 15.4/10,000 in 1992 and 15.5/10,000 in 2006.

Let us now look at a direct measure of residential costs. The following is a graph of the total number of persons, per 10,000 population, registered with CDDS, who do not live either at home (being cared for by a parent or guardian) or independently. This would include residential options such as group homes, as well as institutional care facilities, nursing facilities, etc.



As readers can see, there is actually a slight downward trend in the number of developmentally disabled persons who do not live at home or independently. The prevalence of this type of living arrangement was 10.7/10,000 in 1992 and 10.3/10,000 in 2006. I think we can all agree this is a positive trend.

Conclusion

California data does not support unsubstantiated claims by Evelyn Pringle, Mark Geier and others to the effect that "epidemics" of developmental disabilities will result in either an unmanageable fiscal burden or the destruction of the United States.