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Diagnostic change and the increased prevalence of autism

11 Sep

ResearchBlogging.orgHow real is the “epidemic” of autism? How much of the increase in the number of diagnoses have to do with factors other than a real increase in the number?

I am going to take some time with this paper. If you want the short version of this post–about 26% of the increase in autism counts in California can be attributed to changes in diagnositic practices leading to people being classified autistic (or autistic plus MR) who were classified with mental retardation by pre-1992 standards.

Perhaps the most used dataset for exploring the increase in autism, especially by amateur epidemiologists, is that of the California Department of Developmental Services, or CDDS. The CDDS serves people with developmental disabilities (not just autism) within the state of California. The CDDS made much of its data freely available. While the CDDS data show a large increase in the number of people getting services for autism as a developmental disability, it is difficult to ascertain how much (if any) of this is due to a real increase in the number of people who actually are autistic. This is because it is very hard to know how important external factors are in changing the administrative prevalence of autism.

Many factors influence the prevalence of autism. These include broadening of the criteria for what is called “autism”, such as the change in the 1990’s to include PDD-NOS and Asperger Syndrome in the Autism Spectrum Disorders.

Recently, Hertz-Picciotto and Delwiche found that “three artefacts—younger age at diagnosis, change in the accepted criteria and inclusion of milder cases—accounted for about one-third of a 12-year rise in incidence in California.”

Many people have misrepresented Hertz-Picciotto and Delwiche as showing that there has been a “true” increase in the autism prevalence when, in fact, they state quite clearly “Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.”

One of the artifacts that was not quantified by Hertz-Picciotto and Delwiche was the possibility of diagnostic change and accretion. When diagnostic practices change, a person who would have one diagnosis in one time period might get a different diagnosis in another.

For example, a common question that comes up is this: how many people diagnosed with autism today would have been given a diagnosis of mental retardation 20 years ago?

That is essentially the question posed by Marissa King and Peter Bearman of Columbia University in the paper
The paper, Diagnostic change and the increased prevalence of autism.

This has the possibility to be a very important paper. I don’t think I am stretching when I state this as this paper was published together with commentary from no fewer than five four well known research groups.

Here’s the abstract:

Background Increased autism prevalence rates have generated considerable concern. However, the contribution of changes in diagnostic practices to increased prevalence rates has not been thoroughly examined. Debates over the role of diagnostic substitution also continue. California has been an important test case in these controversies. The objective of this study was to determine the extent to which the increased prevalence of autism in California has been driven by changes in diagnostic practices, diagnostic substitution and diagnostic accretion.

Methods Retrospective case record examination of 7003 patients born before 1987 with autism who were enrolled with the California Department of Developmental Services between 1992 and 2005 was carried out. Of principal interest were 631 patients with a sole diagnosis of mental retardation (MR) who subsequently acquired a diagnosis of autism. The outcome of interest was the probability of acquiring a diagnosis of autism as a result of changes in diagnostic practices was calculated. The probability of diagnostic change is then used to model the proportion of the autism caseload arising from changing diagnostic practices.

Results The odds of a patient acquiring an autism diagnosis were elevated in periods in which the practices for diagnosing autism changed. The odds of change in years in which diagnostic practices changed were 1.68 [95% confidence interval (CI) 1.11–2.54], 1.55 (95% CI 1.03–2.34), 1.58 (95% CI 1.05–2.39), 1.82 (95% CI 1.23–2.7) and 1.61 (95% CI 1.09–2.39). Using the probability of change between 1992 and 2005 to generalize to the population with autism, it is estimated that 26.4% (95% CI 16.25–36.48) of the increased autism caseload in California is uniquely associated with diagnostic change through a single pathway—individuals previously diagnosed with MR.

Conclusion Changes in practices for diagnosing autism have had a substantial effect on autism caseloads, accounting for one-quarter of the observed increase in prevalence in California between 1992 and 2005.

The authors started by looking at the individual records for the 7003 clients of the CDDS born before 1987 who had diagnoses of autism at any time in their CDDS records. These individuals would be at least 8 years old by the time the DSM-IV criteria for autism came out in 1994, so they should have already been diagnosed with autism by that time.

What they found was that 631 individuals started out with a diagnosis of mental retardation and later received a diagnosis of autism. 95% of these individuals retained the MR diagnosis. I.e. most moved from “autism” to a dual diagnoses of autism+MR.

They also found that 89 individuals “lost” their autism diagnosis. They are not discussed in detail, so we can’t tell if they held other diagnoses after “losing” their autism diagnosis.

The authors plotted the number of individuals who changed from MR to autism or autism+MR by year. They claim that the number is higher in years when significant changes in diagnostic practices were introduced.

Figure 1 from King and Bearman paper

Figure 1 from King and Bearman paper

A peak is fairly clear for 1994, when the DSM-IV was issued. Whether this peak and the others are real is a matter for discussion (as in Dr. Hertz-Picciotto’s commentaruy)

Some of the findings the authors reported are very interesting.

Examining the control variables, we see that the level of intellectual impairment of clients had a significant effect on the likelihood of observing diagnostic change. The relationship between severity and the odds of change appears to be non-linear with moderate and profound severity to be at greatest risk for diagnostic change.

The CDDS lists intellectual impairment by the categories mild, moderate, severe and profound. It strikes me as strange that mild ID is not the area with the highest odds of change. It is very strange that there is no clear trend that the odds of change/accretion go up (or down) with severity of intellectual disability.

Another interesting observation:

Changes in evaluation scores, which capture many of the requirements for an autism diagnosis, surprisingly had little discernable effect on the likelihood of diagnostic change [OR 1.02; 95% confidence interval (CI) 1.00–1.04].

This is quite strange to me as well. One would think, perhaps, that the lower the evaluation score, the more likely that someone would have been undiagnosed.

Or, to put it another way, why weren’t the more “obviously” autistic individuals identified before the diagnostic changes?

Finally, race and year of birth were also significantly associated with the odds of change. Persons born in later years, who were younger, were more likely to experience diagnostic accretion or substitution. Finally, African–Americans
were considerably less likely than Caucasians to have a change in diagnostic status.

To me, this speaks to the idea that not everyone who qualifies for an autism diagnosis under the changes is getting one. I.e. the CDDS still has a clients in this older cohort who are misclassified as MR instead of autism. For example, 0lder clients are less likely to have a family member to advocate for them, and are less likely to see a change in services under autism vs. MR classifications.

The authors then take this “micro level” data (looking at individuals) and apply their findings on a “macro level” (looking at groups of people). In other words, the usethese data to predict how much of the increase in CDDS caseload is due to this one pathway–shift from MR to autism. The results are shown in Figure 4, copied below.

Figure 4 from King an Bearman paper

Figure 4 from King an Bearman paper

They find that by 2005, 26% of the increase in the CDDS caseload can be attributed to the shift from MR to autism.

One important point the authors make is the difference between diagnostic substitution and diagnostic accretion. An example of substitution is an individual having his/her diagnosis change from MR to autism. An example of accretion is when an individual has autism added to the already existing MR diagnosis.

Accretion is harder to discern on a group (macro) level, since one would not see the MR count drop coincident with the autism increase. The authors have included both in their definition of diagnostic change.

The authors note that the MR to autism pathway is not the only possibility.

Diagnostic substitution and diagnostic accretion along other pathways, such as developmental language disorder or other learning disabilities, may be contributing to an increase in higher functioning cases. In a study applying contemporary diagnostic standards and practices to persons with a history of developmental language disorder 21% (8/38) of the individuals met the criteria for autism and 11% (4/38) met the criteria for milder forms of ASD. Thus, there are multiple pathways to an autism diagnosis from multiple disorders that contribute to increases along various parts of the spectrum. In this article, we have considered only one pathway and one part of the spectrum

In other words, more of the increase in the CDDS caseload may be due to diagnostic changes, but in ways not covered by this paper.

One factor the authors do not appear to be taking into account is the large regional disparities within California. The administrative prevalence in the CDDS system varies wildly depending on which part of the stat one looks at. In general, rural areas have much lower administrative prevalence values than urban areas, for example.

The authors’ concluding paragraph:

We have estimated that one in four children who are diagnosed with autism today would not have been diagnosed with autism in 1993. This finding does not rule out the possible contributions of other etiological factors, including environmental toxins, genetics or their interaction to the increased prevalence of autism. In fact, it helps us to recognize that such factors surely play an important role in increasing prevalence. There is no reason to believe that any of these frameworks are wrong and many reasons to believe that the increase in autism prevalence is in fact the outcome of multiple self-reinforcing processes. However, this study demonstrates that subsequent explanations for the increased prevalence of autism must take into account the effect of diagnostic change.

I think this is quite good–the paper does not rule out a true increase in autism prevalence. It does demonstrate that factors like diagnositic change and accretion are real and significant.

Many factors are involved with the increase in autism prevalence, including that in the CDDS data. Just because the number of people identified with autism went up doesn’t mean that all of that number is due to a real increase in the number of people who are autistic.

King, M., & Bearman, P. (2009). Diagnostic change and the increased prevalence of autism International Journal of Epidemiology DOI: 10.1093/ije/dyp261

Andrew Wakefield gives NBC “talking points”

11 Sep

Dr. Wakefield “took issue” with a recent Dateline episode discussing him and his work. Thoughtful House (his clinic) has offered Dateline some talking points to, I gather, give “the full story” that Dateline supposedly missed.

Since there is next to zero chance that Dateline will act on them, I thought I would take a look at the talking points:

A. There has been extensive replication of the finding of bowel disease in children with autism (ASD) from five different countries. These findings have been published in peer-reviewed journals or presented at scientific meetings. It is therefore incorrect and misleading of Matt Lauer to have stated that every aspect of my original hypothesis has been disproved. On the contrary, the main findings of the original Lancet paper, that is, bowel disease in autistic children, has been repeatedly confirmed. This obvious inaccuracy requires clarification by NBC.

One of my many failings is that I am a sloppy writer and, yet, I key in on imprecise language in the work of others. Case in point:

“On the contrary, the main findings of the original Lancet paper, that is, bowel disease in autistic children, has been repeatedly confirmed. ”

“…the main point of the Lancet paper, bowel disease in autistic children…”

Very imprecise. What about bowel disease in autistic children is the finding of the Lancet article that Dr. Wakefield wants us to know? The statement is so vague that all we are left with is the fact that some autistic children have bowel disease.

This is misdirection on Dr. Wakefield’s part. It isn’t even good misdirection. The Dateline story wasn’t “the career of Andrew Wakefield, what he got right and wrong”. It was about the assertions that MMR cause autism.

Dr. Wakefield makes it appear that this statement was Matt Lauer’s. It is a fine point, but Matt Lauer didn’t state that “…every aspect of my original hypothesis has been disproved”. The statement was from the American Academy of Pediatrics, which Matt Lauer quoted with attribution.

It’s worth recalling what the Lancet paper stated. The concluding paragraph of the 1998 Lancet article was:

We have identified a chronic enterocolitis in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after measles, mumps, and rubella immunisation. Further investigations are needed to examine this syndrome and its possible relation to this vaccine.

Had Dr. Wakefield himself distanced himself from the MMR-causation theory in the last 10 years, even a little, I’d think it reasonable for him to emphasize the the idea that he brought to light GI disturbances in autistic kids. But he hasn’t. It isn’t what the Dateline story was about.

The big question, if he thought this was important, why didn’t Dr. Wakefield himself emphasize that in the interview?

Dr. Wakefield’s second point:

B. The shortcomings and the flaws of the studies quoted by Dr. Offit, claiming to disprove an association between vaccines and autism, were not discussed in the program. In my interview with Mr. Lauer I took as an example a paper from Dr. DeStefano from the CDC claiming to exonerate MMR that actually showed that a younger age of vaccination with MMR is associated with a greater risk of autism. This study confirms the association and has been falsely portrayed as vindicating the vaccine. This should have been included in order to provide balance to the program.

Can someone tell me what DeStefano paper and what analysis he is talking about?

C. Reference was made to an autistic child in the vaccine court whose claim for MMR damage was overturned by the judge. No reference was made to the successful vaccine court case on behalf of the child Bailey Banks, coming just one week after the unsuccessful claim described by Mr. Lauer, in which the judge ruled that MMR vaccine can cause autism. Therefore, in the view of vaccine court, it is not a question of whether or not MMR can cause autism, but rather how many children are affected.

The case referred to in the Dateline episode was that of Michelle Cedillo. Her’s was the first “test case” to be heard by the Autism Omnibus Proceeding.

Her case was first heard by a “special master”, who denied compensation. The case then was appealed, and the judge didn’t “overturn” anything. The judge upheld the original decision.

The Bailey Banks case is one that gets debated a lot on the net. Rather than go into that again, let’s ask: how does this relate to Dr. Wakefield’s research? Perhaps I missed it as I did some very quick searches, but I didn’t find anything in the Bailey Banks decision that had anything to do with digestion/inflamation/enterocolitis/constipation/diarrhea… I think you get the idea–the case has nothing to do with Dr. Wakefield’s ideas about autism and the gut.

I.e. Wakefield’s point C is another diversionary tactic.

D. There was a complete absence of comment on the lack of any adequate safety studies of childhood vaccines and the vaccine schedule in particular. There was no mention of the admission by vaccine regulators that there is no data on the long-term safety of vaccines, the chronic disease burden caused by vaccines, and the likely potentially harmful interactions between various vaccines in the routine schedule.

Have you heard the phrase “diversionary tactic” too often yet? What does any of this have to do with whether Dr. Wakefield’s research? This is a favored diversion in online discussions of vaccines/autism. When people run out of real ammunition (and they do quickly), switch to trying to debate general safety of vaccines–and it almost worked. Instead of addressing some of your comments, I’ll move on to your fifth point:

E. Undue credibility was given to Brian Deer, a discredited freelancejournalist, whose false reporting has caused so much misunderstanding and damage to children through the misrepresentation of the doctors and parents who were seeking answers to the vaccine-autism question. Deer has repeatedly misled the public and the medical profession and has been unable to respond to clear evidence of his false reporting in the Sunday Times through the UK’s Press Complaints Commission.

Nice slam, there, Dr. Wakefield. Given the sloppy nature of your previous comments, I am impressed that you pulled this together so well.

You make it seem like it is accepted that Brian Deer is “discredited”. I guess if you don’t get out of Thoughtful House or autism-parent conventions, you might think that.

The “unable to respond…” bit is pretty classic. The Press Complaints Commission isn’t hearing the complaint until after your own GMC hearing, correct? So, I guess he has been unable to respond at the PCC. But, did that really stop him from responding? I seem to recall a pretty sharp worded response that Orac hosted on Respectful Insolence.

Didn’t you, Dr. Wakefield, bring that complaint to the PCC? If so, nice job leaving out the fact. It would come across quite differently had you stated: “…and has yet been unable to respond to clear my claims of his false reporting in the Sunday Times through the UK’s Press Complaints Commission.”

F. It was not disclosed that I have repeatedly invited Dr. Offit to take part in public debate on the safety of MMR vaccine and the false and misleading claims that he has made in the media and his book. He has refused to accept this invitation and has continued to hide from an open and honest debate.

Why would NBC waste time on this? Was it pertinent to the discussion? Answer: no.

I think they did you a favor by not mentioning it. No one looks good with the “So and So won’t debate me” argument. They just don’t. The “please debate me” argument is a staple of the crank. I doubt you wish to appear to be in that category, do you?

Academics “debate” in the literature, not on some stage. If you want to debate Dr. Offit, come up with some good research. Publish it.

Alternatively, if you want to see how a Wakefield/Offit debate comes out, read “autism’s false prophets”. If that is “hiding”, he hasn’t done a very good job of it.

G. NBC alluded briefly to the fact that Richard Horton, editor of The Lancet, was informed of my participation as a medical expert in the MMR litigation almost one year before publication of the Lancet paper in 1998. NBC failed to clarify that when Horton was challenged to respond to the fact that when he so enthusiastically denounced me and the paper in 2004 the Lancet staff was already fully aware of the facts and at that time did not consider them to be relevant. Horton refused to be interviewed by NBC and the interview segment shown was from 2004. This refusal is in sharp contrast to his willingness to denounce me in the media in 2004. NBC also failed to mention that in the light of these facts Horton has been reported to UK’s General Medical Council on an allegation of perjury.

Even if true, this is just more diversions. If you thought it important enough to fax all this information to the Lancet, why didn’t you include a conflict of interest statement in the article itself? The referees would have appreciated that, I believe. Was there any mention of potential conflicts of interest in your cover letter to The Lancet when you submitted the paper? Or in the cover letter for your acceptance? All of those were places where you should have made such statements.

H. It was unfortunate that NBC, having stated their determination to resist external pressure to distort the balance of the program, yielded to such pressure from the American Academy of Pediatrics, allowing them the final word in the program while denying representation from the National Autism Association who put forward to NBC a rational and well reasoned call for further science to resolve this very real issue.

I’m sorry, but are you seriously putting he “National Autism Association” on equal footing with the American Academy of Pediatrics? How many members does the NAA have? (a lot less than the AAP) What is the name of their journal (they don’t have one) What is the impact factor of their journal? (Pediatrics is a very well respected journal).

Given the NAA’s recent childish antics with their attempted slime job against Dr. Offit (which you, Dr. Wakefield, participated in), I think that Dateline has been proven correct for not airing their comments.

I. Dr. Offit cited a large population study of autism and MMR from Denmark in support of his claim to ‘certainty that there is no link.’ This study was so flawed that it was rejected from consideration by the gold standard scientific review by the highly influential Cochrane Collaboration. Dr. Offitt, who is not an epidemiologist, was clearly at a loss to understand the study’s fatal flaws.

“Dr. Offitt, who is not an epidemiologist…” What’s up with that comment? I’m sorry, is Dr. Wakefield an epidemiologist? Answer: no. Do you have to be an epidemiologist to understand the study or it’s strengths or flaws? No.

What fatal flaws is Dr. Wakefield referring to? The big Danish study was by Madsen, et al.. The Cochrane Review lists this study as one of the “cohort studies included in the review”. Not “rejected from consideration”.

That aside, I have the Cochrane Review “Vaccines for measles, mumps and rubella in children (Review)” open. The version I have open is noted: “This is a reprint of a Cochrane review, prepared and maintained by The Cochrane Collaboration and published in The Cochrane Library 2009, Issue 3”, so I think it is the most recent.

I guess if the Cochrane review is “highly influential” and the “gold standard” it would make sense to see what they think of the autism/MMR hypothesis, eh? The review states:

No credible evidence of an involvement of MMR with either autism or Crohn’s disease was found.

Was this because they didn’t know about Dr. Wakefield’s work? Hardly. Four of Dr. Wakefield’s papers were listed. All were listed in the “excluded studies” section.

So where does this leave us? We have, what, nine talking points which are mostly diversions or misrepresentations. Anyone wonder why I don’t think Matt Lauer will be responding to these soon?

Genetic tests and insurance

10 Sep

Does your insurance cover genetic testing?

Many do. But often only in the case of high risk pregnancies or amniocentesis. If you want a diagnosis for your self or your already born child, it’s on your dime.

In other words, if you would like to consider terminating your pregnancy and not bringing a heavy user of insurance covered medicine into the world, the insurance companies are happy to help. If you might be looking for answers, which may result in greater medical expenses, the insurance company doesn’t want to help.

Abercrombie and Fitch to pay fine for refusing to accommodate autistic girl

10 Sep

Accommodations. They don’t have to be big, but they can make a big difference.

Case in point: a 14 year old autistic girl needed help in a dressing room. The store claimed a policy that only one person can be in a dressing room at a time. Surely this policy could be waived in this case?

Such is the case that was recently decided in Minnesota. A local outlet for the Retailer Abercrombie and Fitch refused to allow an autistic girl to bring her sister with her into a fitting room.

According to Minnesota Public Radio, the store wasn’t even following its own policy:

The company’s associate handbook states that only one person is allowed in a fitting room at a time, but adds, “Some exceptions to this rule include parents with their kids and a disabled person’s assistant.” The company designed the policy to reduce theft.

Abercrombie and Fitch has been fined $115,264. Of this, $25,000 will go to the girl for mental anguish. About $41,000 will go to her lawyers.

How Much Longer?

9 Sep

The National Autism Association has a campaign afoot to raise awareness with the catch-phrase “how much longer”.

As in these quotes from their campaign:

“FDA, HOW MUCH LONGER WILL YOU APPROVE VACCINES THAT AREN’T NEARLY AS SAFE AS THEY COULD BE?”

Or

“HOW MUCH LONGER, NIH, before you adequately fund environmental research?”

I have a question:

How much longer, NAA, before you act like a reasonable member of the autism communities? (substitute Generation Rescue or SafeMinds for NAA, they are all basically the same group).

The NAA quote about NIH shows a lot about the NAA’s intent. “Adequately fund environmental research”. A lot of money is going to environmental research for autism causation at NIH. A lot. But, until it includes vaccine-causation, no amount is going to be considered “adequate” to the NAA.

NIH and most of the medical community doesn’t think that there is a good reason to do vaccine-causation research. But that isn’t the reason why groups like NIH don’t fund research. Let’s face it, NIH have an entire center devoted to spending on money that most of the medical community considers a waste.

The NAA would like to place the blame on everyone. Everyone else, that is. It’s a vast conspiracy, funded by Pharma dollars, with everyone afraid to admit the truth about the damage they caused. Do I have that right, NAA?

The real problem, NAA/Safe-Minds/Generation Rescue, is that you are your own worst enemy.

Ask yourselves a very simple question: if NIH is willing to spend money on projects with little hope of success, if NIH is willing to spend money on questions where the general expectation is that the answer will be no (remember that chelation study?), if they are willing to do that, why not spend money on a vaccine-causation project?

To answer that, you have to ask, what is the cost of a vaccine-causation project?

The real cost isn’t calculated in dollars. The real cost in is the damage to public health that such a study would bring. Yes, funding a do-vaccines-cause-autism project would hurt public health.

How can I say that? Because you guys at NAA (and sister orgs) would use the fact that NIH has funded such a project to attack vaccines. The entire time from the approval of the funds to the time the study results were published, you would be claiming “See, the government thinks vaccines are causing the autism epidemic”. What happens when the project is done? If the research doesn’t agree with your position, you will reject it. That is your clear track record.

Besides, what quality independent researcher would take on such a project? Anyone able to do such a study is is likely smart enough to realize that he/she would be hounded for the rest of his/her life if he/she doesn’t publish results that agree with your preset expectations.

You guys are stuck in the past. A past where you could say “vaccines caused an autism epidemic” and people listened. It’s time to listen to the people who support you. Really listen. Listen and realize that just because someone is supporting you doesn’t mean that he/she supports everything you say. Case in point: Dr. Bernadine Healy. Does she say there has been an epidemic of vaccine-induced autism? Does she say the epidemiology is junk? No. She says there may be small groups. Groups too small to be detected in the epidemiology that’s been done. That’s really, really small, by the way.

Get it? Even your supporters say you haven’t proven anything and that at most you represent a small fraction of the autistic population. You’ve been able to “wag the dog” for a long time, but that time is over. It’s time to realize that at most you would be a small part of the autism communities. It’s time to realize that the autism communities are part of a larger disability community.

If this seems too complicated, here are a few simple steps you can take to rebuild your credibility:

1) admit that thimerosal did not cause an “autism epidemic”
2) admit that MMR did not cause an “autism epidemic”
3) stop discounting all science that disagrees with you.
4) stop smearing people who disagree with you.
5) stop creating misleading faux research.
6) stop trying to discredit fine American institutions.
7) stop denying the existence of a large number of adult autistics.

Oh there’s more. A lot more.

As I said above, NIH is willing to fund research that constituents want even when it is very likely to be fruitless. But you have made it expensive to perform from a public health perspective and won’t accept any answer except the one you want.

How much longer until you get vaccine-autism research? You tell us. You are the ones in the way. Your “how much longer” campaign probably just set you back at least a year.

You probably see this as harsh. In reality it is probably the best advice you have been given all day.

Are autistic kids in the foster care system being over medicated?

8 Sep

Who should we as a society be watching out for more than kids with disabilities who are in foster care? They are kids. They are disabled. They don’t have their parents to advocate for them. They are our responsibility once they enter into the foster care system.

What if they are being over medicated?

One subject that comes up a lot in the online autism community is the use of psychotropic medication on autistics. Note that the following is my opinion and not from the paper: medications, including psychtropic medications, have their place and can be beneficial, but great care and monitoring must be taken to insure that they are appropriately used. Psychotropic medications should not be used as chemical restraints.

That is why I was very interested when I saw that this paper was going to be published in Pediatrics: State Variation in Psychotropic Medication Use by Foster Care Children With Autism Spectrum Disorder.

The paper has been out for a while but I couldn’t blog it right away. I wanted to take the time to do this paper justice. In the end, I don’t know if I have as I’m trying to find a good “voice” for this post. I keep switching between trying to give an uncolored presentation of the data and being outraged.

Yes, outraged.

The paper authors are David M. Rubin, MD, MSCE, Chris Feudtner, MD, PhD, MPH, Russell Localio, PhD, and David S. Mandell, ScDd.

If you are a regular reader of this blog, you may know that I have a great admiration for Dr. Mandell and his group. He asks important questions, often about groups like autistic racial/ethnic minorities or about autistic adults. Groups I consider to be the underdogs in the struggle for recognition and services in the autism communities.

Who could be more of an underdog than disabled kids in foster care?

One of the reasons the authors give for studying autistic kids in the foster care system is:

Second, beyond the cumulative impact of trauma on psychiatric symptoms after maltreatment, children with ASD in foster care are particularly vulnerable to the social and psychological disruptions that foster care placements can create, such that an excessive variation in the use of psychotropic medications between states may indicate problems in the ability of different foster care systems to achieve placement stability for these children or adequately provide for their well-being.

My read on that–autistic kids are more vulnerable to being traumatized by the foster care system, and the states using more meds may be worse at being able to care for these kids.

The authors list a number of factors that could play into this, including lack of resources and lack foster parent or caseworker training. One big factor–the possibility that these kids are frequently moved around. This is hard on all kids, but is obviously going to be especially tough on ASD kids.

The objective of the study was:

The objective of this study was to compare on a national cohort of children with autism spectrum disorder (ASD) the concurrent use of >=3 psychotropic medications between children in foster care and children who have disabilities and receive Supplemental Security Income, and to describe variation among states in the use of these medications by children in foster care.

They are looking at kids getting three or more psychotropic medications at a time.

Psychotropic medications include:

neuroleptic, antidepressant, stimulant, anticonvulsant/mood stabilizer, anxiolytic, and hypnotic agents. Lithium was categorized with the anticonvulsants.

What did they find? For starters, 20.8% of autistic kids in foster care were using three or more classes of psychotropic medications. This double the number of kids who were classified as having a disability (10%).

I could see people arguing that by the nature of the disability, autistic kids might be expected to use more psychotropic medications. Or, that kids in foster care might be more likely to use multiple psychotropic medications. The authors acknowledge this, but point out that:

Nevertheless, Although one might expect the overall use of psychotropic medications to be higher for children in foster care than for other children, state-to-state differences in the average use of medication by their children, although expected to vary to some degree randomly, would not be expected to vary excessively unless system-level factors were exhibiting a high level of influence on such use independent of children’s needs.

My interpretation: there is no obvious reason why the use of psychotropic medications should vary much from state to state. There may be some statistical variation, but each state should be pretty close to the average.

That is, unless there are “system-level factors” which have “a high level of influence on the use of psychotropic medications independent of the children’s needs”.

My interpretation: if there is a variation by state, something other than the needs of the children is likely to be causing it.

And, yes, they did find a state-to-state variation in psychotropic medication use:

Forty-three percent (22) of states were >1 SD [Standard Deviations] from the adjusted mean for children who were using >=3 medications concurrently, and 14% (7) of the states exceeded 2 SDs.

Statistically, they would expect 2 states, not 7, to be more than two standard deviations from the average.

OK. My guess is that this point most people’s eyes are starting to glaze over. 14 states instead of 2 are more than two standard deviations away from the average in terms of foster care autistic kids using 3 or more psychotropic medications. Not exactly a sound byte you can take to your congressman, is it?

How about this, in some states over half of the autistic kids in foster care are getting more than 3 psychotropic medications. Half of the kids. Or, how about this–the state-to-state variation in the raw numbers vary by a factor of 10.

Yes. In some states about 5% of the kids are getting three or more psychtropic medications, while in others it is as much as 60%.

Take a look at the figure below (click to enlarge). Pay special attention to the figure on the left, which is the raw data.

Figure 2 from paper on use of psychotropic medication on foster autistic kids

Figure 2 from paper on use of psychotropic medication on foster autistic kids

The raw data show the huge variation in use of psychotropic medications by state.

Why do the raw data and the adjusted data differ so much? The adjusted data is controlled for other diagnosed clinical conditions. These include depression, bipolar disorder, anxiety disorder, attention deficit disorder, conduct disorder, schizophrenia and mental retardation.

ASD kids are more likely to have other diagnoses if they are in foster care. 32% of ASD kids have another diagnosis, while 54% of ASD kids in foster care have 1 or more additional diagnoses. They are more likely to be given medications as well. This is shown in Figure 1.

Table 1 from paper on state variations in medication of foster care ASD kids

Table 1 from paper on state variations in medication of foster care ASD kids

Again, my read on this: A study like this can’t discern why ASD foster kids have more diagnoses and get more medication. It could be that these kids actually have more conditions and need the medications. It is possible that the trauma of the foster care system is affecting these kids greatly. It is also possible that some kids are being given extra diagnoses in order to justify the medications.

The authors note this as quoted below:

Furthermore, we are concerned that the true magnitude of variation might be larger than we report, because our method of analysis adjusted conservatively for other psychiatric conditions listed in the children’s records; if these diagnoses were not accurate (as has been suggested by others)[ref 15] and were instead recorded as a means to justify treatment with medication, then our analysis might have underestimated the true extent of state-to-state variation.

I am very glad they included the raw data in this case. It highlights the big potentiality that there is a bigger state-to-state variation than in the adjusted data.

Seriously, why would ASD foster-care kids in Arizona be more likely to have a second (or third or fourth) diagnosis than the similar kids in Tennessee?

There is a lot more in this paper. But as one final note, here is a comment about the youngest kids in the study:

Finally, we also note that younger children in foster care were proportionately using more medication; as many as 1 in 8 children aged 3 to 5 years in foster care was receiving medications from >=3 psychotropic classes in this sample from 2001

As I mentioned at the outset: who is more vulnerable than a disabled child in the foster care system? For Americans like myself, the kids in this study are our responsibility.

It looks to me like we are failing them.

Special education takes a step forward in Egypt

7 Sep

A recent story from the Egypt Today website caught my eye:

Into the Mainstream
‘After decades of virtually no access to education, children with special needs are getting a shot at the regular school system.’

The story details how the Egyptian Ministry of Education is changing its policy towards special needs students. The story gives an interesting view into how special education is handled in what is to me a very different culture.

It is both encouraging and very discouraging at the same time. According to the story, few of Egypt’s special needs students are currently getting any education. About 1.8%. Egypt plans to increase this to about 10% by 2012. So they are increasing enrollment of special ed students a lot, and will still leave about 90% unserved.

As it stands, children with special needs have had practically no access to mainstream schooling. Now, as the MOE moves to open classroom doors for them, families are faced with a new dilemma: will their children be better off integrated into public and private schools, or should they remain in special schools for the disabled?

The idea is to allow kids only into regular education environments. This will obviously limit who is accepted:

Even after training and renovation, schools will not be able to accept all children with disabilities that come to their doors. A prospective special needs student will undergo an evaluation exam prior to admission. To be eligible for a regular school, a student must not have a dual disability, such as visual and hearing impairments or a combined mental and physical disability. His or her Stanford IQ must be higher than 52 points, and his or her hearing impairment may not exceed the diagnosis of moderately severe hearing loss. Under the MOE plan, each classroom will have no more than four special needs students.

I must say I disagreed with the following paragraph:

“If I’m a child with a disability and I’m always around others who also have disabilities, then I’m not challenged and I don’t have a role model,” says Abdel Hak. In regular schools, she says, a child with special needs interacts with other children and picks up some skills through observation and practice.

I hope Abdel Hak learns soon: a child can be challenged and have a role model while in a special education environment.

This story makes me appreciate all the more the people who pushed through special education laws in the United States. Our system is also both encouraging and (very) discouraging. It is certainly not what I think a special education system should be. But, with apologies to those in Egypt, it could be a lot worse.

Ultrasound: “unlikely to increase the risk of ASD”

5 Sep

A couple of years ago I remember a lot of discussion on the groups I follow about ultrasound as a cause of autism. A lot of parents were concerned that they might have done something that resulted in their child’s autism diagnosis.

A recent study in the Journal of Autism and Developmental Disorders looked into the possibility.

Antenatal Ultrasound and Risk of Autism Spectrum Disorders
by Grether JK, Li SX, Yoshida CK, Croen LA..

Here is the abstract:

We evaluated antenatal ultrasound (U/S) exposure as a risk factor for autism spectrum disorders (ASD), comparing affected singleton children and control children born 1995-1999 and enrolled in the Kaiser Permanente health care system. Among children with ASD (n = 362) and controls (n = 393), 13% had no antenatal exposure to U/S examinations; case-control differences in number of exposures during the entire gestation or by trimester were small and not statistically significant. In analyses adjusted for covariates, cases were generally similar to controls with regard to the number of U/S scans throughout gestation and during each trimester. This study indicates that antenatal U/S is unlikely to increase the risk of ASD, although studies examining ASD subgroups remain to be conducted.

The study doesn’t rule out ultrasound completely, but perhaps this will be welcome news to those parents who were concerned.

California schools with high vaccine exemption rates

3 Sep

The Los Angeles Times has published a list of California schools where the kindergarden class has a high rate of students with vaccine exemptions.

Yes, there are vaccine-rejectionist clusters.

There are about 30 schools with over 50% of the students using exemptions.

Yuba River Charter (Nevada City) 32 of 37 (86.5%) (86%)
City School, The (Lake Balboa) 9 of 11 (81.8%) (82%)
Slvusd Charter (Ben Lomond) 13 of 16 (81.3%) (81%)
Coastal Grove Charter (Arcata) 19 of 25 (76.0%) (76%)
Sunridge Charter (Sebastopol) 25 of 33 (75.8%) (76%)
Sebastopol Independent Charter (Sebastopol) 33 of 44 (75.0%) (75%)
Carmichael Elementary (Carmichael) 82 of 112 (73.2%) (73%)
Waldorf Of The Peninsula (Los Altos) 29 of 40 (72.5%) (73%)
Dehesa Charter (Escondido) 28 of 39 (71.8%) (72%)
Ananda Living Wisdom (Nevada City) 7 of 10 (70.0%) (70%)
Westside Waldorf (Pacific Palisades) 14 of 20 (70.0%)

California is a big state. I guess I shouldn’t be so surprised that there are so many schools. I guess one could try to correlate income levels, parent education levels and the like with the exemption rate.

I’m just glad my kid isn’t at any of the schools listed.

I’m sure there are those who would say, “see, they have high exemption rates and they don’t have outbreaks of disease” and imply or state that there is no such thing as herd immunity.

All I can say is that the kids at those schools are safer because of families like mine.

Is the rate of autism recovery going down with time?

2 Sep

There is evidence that autism recovery is real. At least that is what we are being told on blogs based on data from the latest “National Survey of Children’s Health (NSCH)“.

We’ve already discussed some of the misinterpretations of the NSCH dataset on this site. I had a long post about this question prepared, but let’s just cut to the chase. If biomedical interventions are resulting in more kids recovering from autism, the “recovery rate” would go up with time. Kids born in the early 1990’s, before ideas like chelation and special diets were popular, wouldn’t be recovered at the same rate as kids born in, say, the last 10 years.

This just isn’t the case.  I graphed the “recovery rate”.  Take the number of kids whose parents were told that the kid had autism minus the number where the parents are reporting the child does not presently have autism.  Divide by the total number of kids whose parents were told the kid had autism.  Show as a percentage (click on graph below).

"recovery" rate from the NSCH data

"recovery" rate from the NSCH data

The “recovery rate” is going down. The rate was about 40% for kids born in 1990 but has dropped to below 30% for kids born in 2004.

Note that there is a high “recovery” rate datapoint for birth year 2005. Those kids were 2 years old for the survey and there were very few of them (only 15 kids total compared to about 90 for most birth years). I wouldn’t try to draw any conclusions from that point.

But, what’s the bottom line? The NSCH data don’t support the concept that introduction of “biomedical interventions” are “recovering” kids with autism. If you really wanted to take the data at face value, you would have to say exactly the opposite: the recovery rate has gone down with the growth of “biomed”. I don’t buy that. The easiest explanation is this: older kids have had more time for some medical person to say, “he/she might be autistic”.

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