An autism parent’s thank you to the Chicago Tribune

4 Dec

The Chicago Tribune has taken on a very difficult task lately. They looked closely at alternative medicine and autism. Much more, they reported a number of stories highly critical of the alternative medical doctors and practices.

Below are a number of the stories. If you haven’t read these stories, it is worth taking the time to do so.

Autism treatment: Science hijacked to support alternative therapies
By Trine Tsouderos and Patricia Callahan, Chicago Tribune

Researchers warn against misusing report

Autism treatments: Risky alternative therapies have little basis in science
By Trine Tsouderos and Patricia Callahan ,Tribune reporters

Experimental treatments

Autism treatment: Success stories more persuasive to some than hard data
By Trine Tsouderos and Patricia Callahan ,Tribune reporters

Questionable treatments for children with autism

Autism doctor: Troubling record trails doctor treating autism
Second of two parts By Patricia Callahan and Trine Tsouderos ,Tribune reporters

Miracle drug’ called junk science
By Trine Tsouderos ,Tribune reporter

These sorts of articles take a lot of work. Seriously.

Consider the usual story type: “there is controversy”. Interview both sides for “balance” and submit the story. Yes, that takes work. But, it takes a lot more work to do enough research to be confident that there is no medical controversy.

For example, is there controversy that the Geier’s “Lupron Protocol” is based on a poor understanding of autism science? Only amongst the Geiers themselves and the few parents using the “protocol”. But read what happened when the Trib interviewed Simon Baron-Cohen, the originator of the testosterone/”extreme male brain” concept of autism:

Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.

“The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,” he said.

Scientists don’t use “fills me with horror” very often when discussing other people’s work. It would be very irresponsible for the Trib to take the “balanced story” route and presented counter arguments with anecdotal reports of amazing results from Lupron.

The same goes for when the Trib interviewed members of the Johns Hopkins team that found neuroinflammation in autopsied autistic brains, and found that they strongly felt that many alternative medical practitioners were misusing their findings:

“THERE IS NO indication for using anti-inflammatory medications in patients with autism,” the team wrote.

Meddling with neuroinflammation could actually be a terrible mistake, said co-author Dr. Andrew Zimmerman, director of medical research at the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.

“It may actually be an attempt of the brain to repair itself,” said Zimmerman, a pediatric neurologist. Suppressing the immune response “could be doing harm.”

Again, presenting this as any sort of medical “controversy” would have been irresponsible, leading some parents to apply these therapies on their children.

To put is simply, giving some anecdotal reports claiming these alternative therapies were working would be like a story on Bernie Madoff including quotes from people who made money from his schemes. Actually, the “balanced” Bernie Madoff story would be better in that there are people who demonstrably got out early and made money from his schemes. While I don’t doubt that there were autistic kids who saw gains while under the care of these alternative-medical practitioners, there is no evidence that it was linked to the ill-conceived therapies. What’s worse, it’s easy to find the people harmed by Mr. Madoff. Few parents would be likely to step forward with complaints that the therapies were harmful.

The responses to the Tribune’s stories are simple, and to some extent effective. We all could predict them: “Tribune is against helping autistic children”; “Tribune doesn’t believe that recovery is possible”; “Tribune gives one sided, cherry picked story”.

The defense against such attacks? Being right. To do that takes work. Hard work. The Tribune writers put in the work. This autism parent thanks them for it. I wish there were more stories like this published when I was new to my child’s diagnosis.

Has the Tribune slowed the misuse of science to create ill-conceived “therapies”? Maybe. But not quite yet. Take a look at the AutismOne website, where just a couple of days ago this was posted. Here are two excerpts.

First, they (Defeat Autism Now and Autism One) still heavily rely on the Hopkins team’s results (click to enlarge):

mumper_dec_2_1

Second, they (Defeat Autism Now and AutismOne) still consider treating neuroinflammation to be a treatment for autism (click to enlarge):

mumper_dec_2_2

It must be frustrating for the Trib reporters to see that. Then again, in my view, reporters shouldn’t be writing in order to effect a change. They certainly shouldn’t be trying to embed themselves in the community they report on (for example, Dan Olmsted and David Kirby).

No, they should be reporting important facts. The important fact here is simple: there is no medical controversy about many of these so-called therapies. They are based on junk science, pure and simple. I thank the Tribune for having the guts to make that clear.

26 Responses to “An autism parent’s thank you to the Chicago Tribune”

  1. Laurentius Rex December 4, 2009 at 08:29 #

    It all goes to show that all this so called scientific research is not as neutral nor as ethical as it claims to be.

    A small study result can have damaging consequences, and the scientists are not blameless unless they take an ACTIVE course to head of the misinterpretation of that.

    Simon Baron Cohen in spite of his apologetica ought to have foreseen the possible consequences of the direction of his research long ago, he is making excuses after the fact.

    Larry

  2. Socrates (deceased) December 4, 2009 at 12:59 #

    “Simon Baron Cohen in spite of his apologetica ought to have foreseen the possible consequences of the direction of his research long ago, he is making excuses after the fact.
    Larry

    And that goes for Happé too.

    SBC and FH are reciting their non est mea culpa evermore earnestly as the Day approaches.

  3. jr December 4, 2009 at 22:52 #

    My reaction to the Tribs bit on the “misuse” of the finding of brain inflammation in autism was to wonder why the studies authors had some sort of ownership of how there findings were to be interpreted. The question of what to do, if anything, about inflammation seems to be disconnected from journaling the observation it.

    “These findings reinforce the theory that immune activation in the brain is involved in autism, although it is not yet clear whether it is destructive or beneficial, or both, to the developing brain,” said senior author Carlos A. Pardo-Villamizar, M.D., at the Johns Hopkins University School of Medicine in Baltimore, Maryland.”

    Does anyone know if their finding of inflammation has been replicated? Wouldn’t the finding of inflammation across a broad range of ages suggest that it is a persistent state? If someone has chronic inflammation anywhere else in the body, wouldn’t doctors prescribe anti inflammatory medication, or is ibuprofen in the same category as anything bio-med related?

    • Sullivan December 4, 2009 at 23:03 #

      jr,

      I’m no expert, but try googling “beneficial inflammation”. What if the inflammation is doing something beneficial. Would you want to shut it down?

  4. jr December 4, 2009 at 23:26 #

    I’m no expert either, and I understand there is a debate about whether or not inflammation is a good thing or a bad thing. There just seems to be a singling out of treatment of possible brain inflammation in autism from all forms of inflammation, of which there is a whole class of widely used medications for.

    If the inflammation is chronic, and I have no idea if it is, it may be helpful, but it is not exactly getting the job done in removing the condition the inflammation is responding to.

    I tend to think of inflammation as a painful thing, and I hope this is being studied further. It was reported that the next step of the researchers was to look at genetics, which seems a little like finding an overheated pot of chicken soup on the stove, and then going to look at how the chickens were breed before turning the stove down.

    I have no idea if the treatments that were criticized are good or bad, but I hope the question is being studied, and if inflammation has been identified, I’m not sure why those who treat it should be criticized any more then someone who takes ibuprofen.

    • Sullivan December 4, 2009 at 23:32 #

      I have no idea if the treatments that were criticized are good or bad, but I hope the question is being studied, and if inflammation has been identified, I’m not sure why those who treat it should be criticized any more then someone who takes ibuprofen.

      Read the articles. Read the FAQ. Note that some of the treatments offered don’t affect the sort of inflamation observed.

      Why criticize people who offer “treatments” that could be harmful? That’s what you are asking. The doctors are working from ignorance, and selling their therapies using studies they either don’t understand or, worse, are using to purposely mislead parents.

      Put simply–they don’t know if their treatments are helping or hurting. Yet they apply the treatments anyway. If that isn’t worth criticizing, I don’t know what is.

    • Sullivan December 4, 2009 at 23:39 #

      It was reported that the next step of the researchers was to look at genetics

      Reported by whom? Where? Give a link. This sounds like misinformation or a misinterpretation. It is not consistent with what I have heard coming from that group.

      Dr. Pardo had an abstract at the most recent IMFAR “Expression Profiling of TLR Signaling Pathway Genes in Brain Tissue from Patients with Autism ” Is this what you mean? It is not what you are describing. Gene expression being different than your (odd) chicken soup analogy.

  5. jr December 5, 2009 at 01:17 #

    “Among the next steps in this line of research, Pardo and colleagues are studying how the genetic background of patients and families may influence the development of immunological reactionsin the brain that confer susceptibility to autism.

    http://www.scienceblog.com/community/older/2004/5/20044596.shtml

    I’m not defending any particular treatments. I’m asking why there would be a double standard in criticizing treatment of inflammation in the brain vs other areas.

    • Sullivan December 5, 2009 at 01:39 #

      jr,

      there isn’t a double standard. You are looking at the wrong comparison.

      It isn’t whether to treat inflammation in the brain vs. other areas. The comparison is whether to treat inflammation whether it is beneficial, harmful, or unknown.

      If you know it is harmful, treat it. If you don’t know, don’t.

    • Sullivan December 5, 2009 at 01:46 #

      Thanks for the link. Note that they state

      Among the next steps in this line of research, Pardo and colleagues are studying how the genetic background of patients and families may influence the development of immunological reactions in the brain that confer susceptibility to autism.

      They aren’t doing genetics as the sole next step.

  6. Emily December 5, 2009 at 03:30 #

    This autism parent, scientist, and science writer/editor thanks them, too. I’ve been talking to many folks about this series. Great work on their part.

  7. Visitor December 5, 2009 at 12:24 #

    The Trib is evidently looking for a series to put up for the Pulitzers. They plan those kind of things way in advance, usually following an early good story, which I think they did last February. Good luck to them.

  8. passionlessDrone December 5, 2009 at 17:12 #

    Hi Sullivan –

    The link you provided regarding TLR2 expression by Pardos group was very interesting. Thank you. You might also be interested in looking at Differential monocyte responses to TLR ligands in children with autism spectrum disorders, which demonstrated increased immune responses to TLR2 and TLR4. The authors noted that TLR2 was expressed in the CNS.

    I’ve done some primitive reading on neuroinflammation, but I’ve yet to find anything to indicate that a chronic state of neuroinflammation is benificial. In response to acute trauma it serves a purpose. It seems that a wide variety of neurological disorders are currently undergoing trials of agents to reduce neuroinflammation. Does anyone have any references that indicate that for any neurological disorder, a state of chronic neuroinflammation is preferred to a state of relatively reduced neuroinflammation?

    – pD

  9. Sullivan December 5, 2009 at 19:36 #

    pD-

    It appears to be a “debate”

    Debate: “is increasing neuroinflammation beneficial for neural repair?”.
    http://www.ncbi.nlm.nih.gov/pubmed/18040798

    on the other side:
    Does neuroinflammation fan the flame in neurodegenerative diseases?
    http://www.molecularneurodegeneration.com/content/4/1/47

    I can’t get this paper right now, but the google blurb on this paper:
    P3-354: Role of IL-6–mediated chronic neuroinflammation on amyloid pathology

    “Secondary factors like chronic neuroinflammation and reactive gliosis have … may be beneficial in removing toxic A? aggregates”

    My opinion: At this point it would be reasonable to suspect that neuroinflammation might be harmful–as a basis for reseaerch, not treatment.

  10. Sullivan December 5, 2009 at 19:36 #

    pD-

    It appears to be a “debate”

    Debate: “is increasing neuroinflammation beneficial for neural repair?”.
    http://www.ncbi.nlm.nih.gov/pubmed/18040798

    on the other side:
    Does neuroinflammation fan the flame in neurodegenerative diseases?
    http://www.molecularneurodegeneration.com/content/4/1/47

    I can’t get this paper right now, but the google blurb on this paper:
    P3-354: Role of IL-6–mediated chronic neuroinflammation on amyloid pathology

    “Secondary factors like chronic neuroinflammation and reactive gliosis have … may be beneficial in removing toxic A? aggregates”

    My opinion: At this point it would be reasonable to suspect that neuroinflammation might be harmful–as a basis for research, not treatment.

  11. passionlessDrone December 5, 2009 at 21:25 #

    Hi Sullivan –

    I’ve actually read most of the first paper you linked to; it is the text of an formal debate on the possibilities of initiating or augmenting an immune response in the CNS in order to facilitate repair. It seems to be largely based on acute injuries; i.e., spinal cord injuries, but there is some discussion on things like Alzheimers.

    I was reading this one at work one day, and started laughing aloud. My coworker asked, what the hell could be so funny in a paper about neuroinflammation?

    It is important to emphasize that if too few of these cells were injected, there was no effect; if too many were injected, the disease was very severe with no benefit, even exacerbation
    of the damage. Therefore, only a very controlled boost of autoimmune activity after CNS injury
    can be expected to be of benefit to neural tissue. Of course, by no means do we propose to inject patients after spinal cord injury with autoimmune T cells. We would not want to cure serious injuries by inducing multiple sclerosis!

    Haha.

    There was some discussion in this paper about the large amount of potential pitfalls in modification of the immune response; my take was that just because we had a marker we could try to move, the other implications might not be understood.

    The other paper you listed I’ll have to try to get; but this is one of the (seeming) paradoxes of what we see in autism; a lack of plaques or other signs of “damage” to the brain. [excepting, perhaps, dendritic spine modifications, or reductions in cells such as the Purkinje]. With the caveat of very limited observations, it seems that the primary observable pathology is neuroinflammation without associated physical or autoimmune components.

    Does anyone know if Vargas actually looked for B/T cell infiltration? It doesn’t look like they did to me. This would seem to be a useful piece of information. The other direct measurement of inflammation in autism I’ve seen, Li 2008, also did not appear to look directly for T/B cells, but did mention participation of the adaptive immune response based on cytokine families detected. I’m not sure if thats cheating or not.

    Thanks for the response.

    – pD

  12. Prometheus December 7, 2009 at 20:17 #

    pD admits that he has only “…done some primitive reading on neuroinflammation…”, yet he feels confident enough in his knowledge of the field to immediately state:

    “…but I’ve yet to find anything to indicate that a chronic state of neuroinflammation is benificial [sic].”

    Keep reading, pD, you’ll find it.

    Amazing what the arrogance of ignorance can do.

    Prometheus

  13. passionlessDrone December 7, 2009 at 21:18 #

    Hi Prometheus –

    I’ve read enough to know that every time I see one group that has signs of chronic neuroinflammation and the other doesn’t, given a choice, I’d chose the group without neuroinflammation. All I was confident in was that I hadn’t seen anything opposite of this trend, as opposed to my intimiate knowledge of the field. You even quoted this in your response.

    pD admits that he has only “…done some primitive reading on neuroinflammation…”, yet he feels confident enough in his knowledge of the field to immediately state:

    “…but I’ve yet to find anything to indicate that a chronic state of neuroinflammation is benificial [sic].”

    I quite genuinely asked for a link that indicated the opposite:

    Does anyone have any references that indicate that for any neurological disorder, a state of chronic neuroinflammation is preferred to a state of relatively reduced neuroinflammation?

    In response, you admit that you are amazed at my ignorance.
    The irony is that you seem completely without clue as to the arrogance of self righteousness, or indeed, the effect of ad-hominem attacks on the credibility of your position; whatever that is.

    Attitudes like this are a great asset to my position. Keep it up!

    Does anyone else have any links towards a state of chronic neuroinflammation being more benificial than a state of reduced chronic neuroinflammation in a neurological disorder?

    – pD

  14. Prometheus December 7, 2009 at 22:48 #

    I’m sorry, pD, I shouldn’t have assumed that you were asking a rhetorical question. Let me be attempt to atone for my presumption by trying to answer the question.

    pD asks:

    Does anyone else have any links towards a state of chronic neuroinflammation being more benificial [sic] than a state of reduced chronic neuroinflammation in a neurological disorder?

    This is really two questions which need to be asked in sequence –

    [1] Is there ever neuroinflammation in the absence of abnormality, disease or disorder? (i.e. is neuroinflammation, by itself, a disorder or is it a finding which can be present without disability?)

    Short answer: No. Because of the way inflammation is defined, it is unlikely that it will be found in the absence of abnormality/disease/disorder, although it is possible that it might be found in the absence of known or detectable abnormality, disease or disorder. Inflammation – pretty much by definition – is abnormal.

    This, of course, is different from saying that neuroinflammation is always accompanied by detectable neurological signs or symptoms. We assume that it is, but there hasn’t been any large-scale study of otherwise neurologically normal people looking for signs of neuroinflammation.

    It remains possible that there are people with laboratory or imaging signs of neuroinflammation who do not manifest any symptoms. However, were that to be the case, the assumption would most likely be that they were experiencing a sub-clinical disease or disorder because of the assumption that inflammation – because it is abnormal – is pathological.

    [2] Are there conditions where a lack of inflammation is a “bad” thing?

    You bet! And this is what Drs. Zimmerman and Pardo are trying to convey to the people who claim to be treating “neuroinflammation” in autism. Although inflammation is – again, pretty much by definition – abnormal, it is not necessarily a good thing to get rid of it.

    This is distinct from the question of whether the “treatments” used by certain quacktitioners are actually capable of treating neuroinflammation. Drs. Zimmerman, Pardo and many others have pointed out that even if it were possible to reverse the neuroinflammation seen in (some) autistic people, it might not help and it could possibly hurt them.

    So, as to whether it is “beneficial” to have neuroinflammation depends on whether you have it or not. Absent any data suggesting that neuroinflammation is an improvement on a lack of inflammation, I wouldn’t suggest trying to induce neuroinflammation. It is the current assumption – given a lack of conflicting data – that inflammation, whether in the brain or on the skin – is a sign of disease or injury.

    However, if someone already has neuroinflammation, especially if the cause is unclear – as it is in autism (if neuroinflammation is a consistent finding in autism – also not yet shown), it is not always a “good” thing (or even a “possible” thing) to treat it.

    Again, I apologize to pD for assuming that he understood the difference between not wanting to rush to treat neuroinflammation before the cause is understood and thinking that neuroinflammation is “beneficial”. It was presumptive of me.

    Prometheus

  15. passionlessDrone December 8, 2009 at 19:03 #

    Hi Prometheus –

    I appreciate your response. Would you (or anyone) be willing to entertain a few more genuine questions?

    We assume that it is, but there hasn’t been any large-scale study of otherwise neurologically normal people looking for signs of neuroinflammation.

    Heh. This did get me to thinking, however, if there was the potential for biomarker style information to be gleaned in so far as the prevelance of neuroinflammation in conditions commonly thought to have previously comprised a lot of people with autism; i.e., mental retardation? I wasn’t really able to find anything meaningful on this. It is a bit strange, there is a ton of information regarding things like Alzheimer’s and Parkinson’s, but nothing on MR. I’m curious on anyones thoughts as to why this relative dearth of information, even less than in autism (!), might be the case. (?)

    You bet! And this is what Drs. Zimmerman and Pardo are trying to convey to the people who claim to be treating “neuroinflammation” in autism. Although inflammation is – again, pretty much by definition – abnormal, it is not necessarily a good thing to get rid of it.

    OK. Are there neurological conditions that fit this classification? Shooting from the hip, I suppose persistent infections, maybe. (?) To some extent this ties into the question I had above; the seeming paradox that as opposed to many other neurological disorders with concurrent neuroinflammation, the neuroinflammation is present alongside some other signs of damage, and we don’t seem to have these “other types” of observations in autism. I am aware this may be an artifact of limited observations.

    However, if someone already has neuroinflammation, especially if the cause is unclear – as it is in autism (if neuroinflammation is a consistent finding in autism – also not yet shown), it is not always a “good” thing (or even a “possible” thing) to treat it.

    The possibility of treatment is a problem in context of the article; but it does seem like there is a lot of unknown in how things like IVIG actually perform their magic, albeit in conditions of more readily accepted autoimmune pathology. And again, I suppose this also drives back towards whether or not we’ve actually looked for, and failed to find, true adaptive infiltration into the CNS in autism or not; I’ve been unable to answer this question, though this may be due to limitations other than the available research.

    Thanks for the response.

    – pD

  16. jr December 9, 2009 at 17:01 #

    Thanks all for the additional comments on inflammation. Sullivan, just to be clear, my analogy was not meant to be of a reference to the Thanksgiving picture. The 2004 inflammation finding seems to me to be pretty significant compared to the attention it has received in recent history in discussions on autism, almost as if people have walked away from it, which is what the analogy was getting at. I’m sure those of you who have followed this longer and in greater detail have not forgotten about it, but for a more recent follower such as myself, the criticism in the Tribune on attempts to treat this condition came across as somewhat backwards news. So, I understand this to be a number of open questions – what is the relationship between neuroinflammation and autism, is it chronic, is this inflammation beneficial or harmful, does the inflammation cause negative symptoms that can be relieved without interfering with the benefits of inflammation, does the increased blood flow from inflammation have beneficial symptoms unrelated to healing, if harmful, what treatments are effective in reducing the inflammation, and I guess a big one which would be what triggered the inflammation in the first place, and can that be addressed. (run on complete).

  17. passionlessDrone December 9, 2009 at 18:25 #

    Hi Jr –

    The 2004 inflammation finding seems to me to be pretty significant compared to the attention it has received in recent history in discussions on autism, almost as if people have walked away from it, which is what the analogy was getting at.

    Indeed. You might be interested in knowing that we have several other complimentary studies to Vargas, that have received even less (or no) attention.

    Elevated Immune Response in the Brain of Autistic Patients had broadly similar findings to Vargas.

    When evaluating to see which genes were being expressed in the CNS in autism, Immune transcriptome alterations in the temporal cortex of subjects with autism”> found evidence of an immune response in the brain also; though the authors state that this expression profile was not suggestive of an ongoing innate immune response.

    Looking for other markers, Glial fibrillary acidic protein is elevated in superior frontal, parietal and cerebellar cortices of autistic subjects found additional evidence of microglial and astroglial activation compared to controls.

    Of course, whether or not this can be treated successfully, and if it should, are difficult questions to answer conclusively right now. Most of these studies suffer from very small sample sets; likely as the result of the difficulty in accessing post-mortem autistic brain tissue. ( ? )

    – pD

  18. Visitor December 9, 2009 at 19:26 #

    “Most of these studies suffer from very small sample sets; likely as the result of the difficulty in accessing post-mortem autistic brain tissue.”

    Can’t they get some from Andrew Wakefield?

    • Sullivan December 9, 2009 at 19:58 #

      Visitor,

      there are people who would interpret your comment as a threat against Dr. Wakefield. Under normal situations, this wouldn’t be good. Give the extreme and irresponsible behavior of the vaccines-cause-autism crowd lately, I think we need to be extremely careful in our speech.

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