Saturday, July 30, 2011

Study : Onset patterns in autism: correspondence between home video and parent report.

Another day, another interesting study.  This time researchers looked at home video recording of children with autism and attempted to determine what the onset of autism looked like.  They found that there appeared to be three separate tracks of development - from birth, regression, and plateau.

This result is similar to another study from last year.  But in that study, children who went on to develop autism were found to be virtually indistinguishable from the peers until sometime between the 6 to 18 month mark and suggested that most cases of autism were a combination of plateau and regressive.

I haven't read the current study text (yet) but I think one of the differences between these two studies is that the current one seems to be looking backward using existing video snippets while the earlier one actually evaluated the children numerous times as they aged.

It is easy to look at a video clip knowing that a child has autism and see "signs" of what could be autism when it could equally be an off day or non-typical behavior.  I am not saying that the current study did that but it is always a hazard of relying on video.  Although the current study does have an awful lot of clips so maybe the clips were done on a regularly planned interval.

The study does have a good point about parents being able to properly recall their children's development.  It is hard to remember what exactly a child was or was not doing at a specific point in time years later.  Although then again, equating parental answers on the ADI-R to actual parental recall of development might not be completely valid.

Onset patterns in autism: correspondence between home video and parent report.

J Am Acad Child Adolesc Psychiatry. 2011 Aug;50(8):796-806.e1. Epub 2011 Jun 2.
Ozonoff S, Iosif AM, Young GS, Hepburn S, Thompson M, Colombi C, Cook IC, Werner E, Goldring S, Baguio F, Rogers SJ.
University of California-Davis.

The onset of autism is usually conceptualized as occurring in one of two patterns, early onset or regressive. This study examined the number and shape of trajectories of symptom onset evident in coded home movies of children with autism and examined their correspondence with parent report of onset.

Four social-communicative behaviors were coded from the home video of children with autism (n = 52) or typical development (n = 23). All home videos from 6 through 24 months of age were coded (3199 segments). Latent class modeling was used to characterize trajectories and determine the optimal number needed to describe the coded home video. These trajectories were then compared with parent reports of onset patterns, as defined by the Autism Diagnostic Interview-Revised.

A three-trajectory model best fit the data from the participants with autism. One trajectory displayed low levels of social-communication across time. A second trajectory displayed high levels of social-communication early in life, followed by a significant decrease over time. A third trajectory displayed initial levels of behavior that were similar to the typically developing group but little progress in social-communication with age. There was poor correspondence between home video-based trajectories and parent report of onset.

More than two onset categories may be needed to describe the ways in which symptoms emerge in children with autism. There is low agreement between parent report and home video, suggesting that methods for improving parent report of early development must be developed.

PMID: 21784299

Friday, July 29, 2011

Study: Fatigue, Wellbeing and Parental Self-Efficacy in Mothers of Children With an Autism Spectrum Disorder.

This just in - being the parent of a child on the spectrum can wear you out.  And here I thought I was tired all of the time just because I was getting old...

But in all seriousness, it is a good thing that some people are taking the stress involved with raising a child on the spectrum seriously.  There are many families out there that are being literally crushed under the weight of trying to deal with autism and could really use some extra help.

Fatigue, Wellbeing and Parental Self-Efficacy in Mothers of Children With an Autism Spectrum Disorder.
Autism. 2011 Jul 25. [Epub ahead of print]
Giallo R, Wood CE, Jellett R, Porter R.
Parenting Research Centre, Australia.

Raising a child with an Autism Spectrum Disorder (ASD) presents significant challenges for parents that potentially have a impact on their health and wellbeing. The current study examined the extent to which parents experience fatigue and its relationship to other aspects of wellbeing and parenting. Fifty mothers of children with an ASD aged 2-5 years participated in the study. Compared with mothers of typically developing children, mothers of children with an ASD reported significantly higher fatigue, with overall scores in the moderate range. Factors associated with high levels of fatigue were poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was also significantly related to other aspects of wellbeing, including stress, anxiety and depression, and lower parenting efficacy and satisfaction. The need for interventions to specifically target parental fatigue and its impact on families affected by ASDs both in the short and long term is clearly indicated.

PMID: 21788255 

Thursday, July 28, 2011

New Wandering Code Approved

The new "controversial" medical code for wandering has been approved by the ICD-9-CM Coordination and Maintenance Committe.  I say controversial, but it isn't a controversy for anybody except the self-appointed guardians of autism's virtue, ASAN.

It is nice to know that ASAN and their ilk don't have much pull when it comes to dealing with issues like this.  These self-advocate groups want to make autism into some sort of civil rights movement, saying things like this new wandering code will "enable abuse and restrict the civil rights" of people with disabilites, while the rest of world seems to understand that wandering is a serious safety issue.

Many children with autism have died because they wandered away from home and yet ASAN is worried about some hypothetical restriction of civil rights.  As a parent, I would much rather my children have their "civil rights" violated and live to tell the tale rather than preserving those hypothetical rights and ending up dead.

I have to wonder (yet again) just who ASAN thinks they are advocating for.  It certainly isn't the needs to the majority of people (or children) who have autism.

It has been estimated that almost half of all children with autism between the ages of 4 and 10 wander.  And even more frightening, one out of three of the children don't have the communication skills to even tell anyone their name or where they live.  Does ASAN think their stance against a medical code for wandering is in the best interest of these children?

If you want more information on wandering and autism, please visit AWAARE.

Below is the CDC's press release on the new code.

ICD-9-CM Code for Wandering

The ICD-9-CM code for wandering , effective October 1, 2011, is designed to promote better data collection for and understanding of wandering and to prompt important discussions about safety among healthcare providers, caregivers, and the person with a disability to the fullest extent possible.

Wandering places children and adults with autism spectrum disorders (ASDs) or other disorders in harmful and potentially life-threatening situations—making this an important safety issue for individuals affected and their families and caregivers. Children and adults with ASDs and other developmental disabilities are at higher risk of wandering off than are children and adults without these disorders or other cognitive disorders.

At the request of the Interagency Autism Coordinating Committee, a Safety Subcommittee was convened to address wandering and other safety issues for children and adults with ASDs. CDC, as a member of the Subcommittee, submitted a proposal for the wandering code to the ICD-9-CM Coordination and Maintenance Committee for consideration at the March 2011 meeting, which represented the final opportunity for additions/revisions to the ICD-9-CM until 2014. As part of the Coordination and Maintenance Committee’s usual procedures, proposals were open for public comment for 4 weeks, and revisions  to the ICD-9-CM were announced online on June 10, taking effect October 1.

This code is intended to capture information about individuals, with any condition classified in the ICD, who wander. Wandering was deleted as a subcode under the Alzheimer’s and dementia code and added as a condition to be noted in association with disorders classified elsewhere [V40.31]. The intention is to provide a way to document, understand, and improve the situation for individuals who are at risk of injury or death due to dangerous wandering. Wandering should be coded if documented in the medical record by the provider (i.e., physician).

The wandering code is not linked to a specific diagnosis, nor is it part of the diagnostic codes used for autism or intellectual disabilities. The ICD-9-CM classifies behaviors and risk factors in addition to diseases and syndromes; as such, the wandering code is used in conjunction with other diagnostic and symptom or procedure codes.

Wednesday, July 27, 2011

Brian Deer "Immensely Proud" of Using Deception to Collect Data Included in the BMJ Article

In my last post I talked about the possiblity that Brian Deer might have used deception to collect statements used in his BMJ article.  Well, that is no longer a possiblity but now an almost certainty.  Mr Deer did in fact use a fake identity in requesting and conducting an interview and quotes from this interview were later included in the BMJ's article.

Here is Brian Deer explaining the situation in his own words (out of respect for the privacy of the mother, I have removed her actual name and replaced it with Smith) -
Exactly right. In fact, not only do I have no shred of doubt about interviewing Rosemary Smith while using a pseudonymn, I’m immensely proud of the encounter (reported seven years ago in The Washington Post) which, with a similar (telephone) interview with Jackie Fletcher of the Jabs group, gave probable cause for the inquiries which I believe eventually brought about the collapse of the vaccine-autism fraud in both the UK and the USA.
Thanks Ms Smith.

I discussed the intended use of a pseudonym in advance with editorial and legal staff, and the subterfuge was wholly justified by the public interest in the safety of children by means of vaccination, which Ms Smith sought to challenge. The challenge was to get a detailed account of her story, unaffected by any assumptions she might have about the person she was speaking to. Indeed, clown that he is, Mr Olmsted evidences in his poisonous tirade against me the need for a pseudonym when he observes that Ms Smith would never have talked to me if she had looked at my website. Ethics case closed.

The untold circumstances of the interview, in late 2003, were that Ms Smith and I talked (as Mr Olmsted notes) for some six hours. Your readers might wish to consider whether any encounter, in the interviewee’s own home, could have effectively gone on all day were it not to the best standards of courtesy and interest. I was not exactly shouting allegations through her letter box. If I find the time, I may post audio from that interview on my website.

In her letter, Ms Smith also wishes the world to believe that I would use only one audio cassette, which I’m supposed to have kept turning over (hence erasing the previous portions of the interview!). Think about it. Her claim might once have been wishful thinking. Seven years later, and with a crucial passage published in the BMJ, it just looks pitiful.

The truth of what happened was that we had a long, amicable and wide-ranging discussion (featuring frequent cups of tea and a sandwich), near the end of which I asked her what it was that she thought was the trump card for the claimants in what was then still a possible UK lawsuit over MMR. She told me it was the O’Leary measles tests.

At that point, I made what I now realize to have been a mistake. I gave her my honest and well-intentioned impression, which I’d gained even within a few days of starting my inquiries, that O’Leary’s work was probably a bust (as it turned out to be). I also said to her that I thought she needed to be wary of lawyers, experts, journalists (yes indeed), politicians and others who I thought had piled into the story, would drain was was useful for them, and then move on, leaving parents looking back wondering what on earth had happened (as it turned out to be). I’ve seen this in a number of pharmaceutical product liability disputes, and in Britain it’s always the patients who get shafted.

The consequence of what was, in fact, a kindly observation of someone with some experience of these sort of issues – me – was that the atmosphere darkened as Ms Smith realized that I was not a “supporter”, as she had assumed, but had a detached view of the whole thing. I was not part of the Wakefield-journalist collaboration which then dominated British media discussion of MMR.

The next day, she spewed out a torrent of foul abuse (of the kind with which people who read Mr Olmsted’s blog will be familiar) in a letter to the editor of The Sunday Times (who just nine days ago singled out the MMR story in an article about investigative journalism). She didn’t then know that I had used a pseuonym. Her aim was to keep the material from public view – and perhaps just to vent her bile.

This abuse was so horrendous and bizarre that Mr Olmsted feels obliged to edit out of her letter some of the stranger stuff which I think, if read in context, would leave any rational person wondering about her sanity. He tells his reader(s) that he has only omitted “a few irrelevant details”. He lies. He has left out material which would tend to undermine Ms Smith’s credibility (incidentally, he is also presently grappling with how to leave out a direct allegation of fraud against Wakefield made in another letter by a Lancet 12 parent).

Even in 2003, my investigation was very time consuming. I hadn’t then looked into Ms Smith and I didn’t then know that talking to her amounted to talking to Wakefield. The pair of them were in it together. However, I did get from her a detailed account of what she said happened to her son (which broadly squares with her case in litigation), and it was at total variance with what was recorded in the Lancet.

This anomaly became the question. The answer only came when Wakefield made the biggest mistake of his life and sued me for libel in a “gagging” attempt to shut down further debate over MMR. For, in that action, I obtained a court order which permitted me to read the Lancet children’s medical records, and, armed with the arising insight, I then sat through the GMC hearing where those records entered the public domain.

In summary, not only are there no ethical irregularities in my work, but my stories on MMR are now widely-regarded as the textbook public interest investigation in the field of medicine. Hence, my second British Press Award, which, as every British journalist will know, are immensely difficult to win.
I think my option of Mr Deer actually was lower after reading this, if such a thing is possible.  The only good things that comes from this passage are that Mr. Deer's motives in this whole matter are becoming clearer and that several unanswered questions have been answered.

Notice that Deer says that  he was of the opinion that the whole Wakefield matter was a fraud "within a few days of starting my inquiries" back in 2003.  I always thought the purpose of an investigation like the one he undertook was to find the truth of the matter, not to find the facts that meet your preconceived notions.  Apparently I was wrong.

I am now quite convinced that Deer's sole motivation was simply to get a story and I think it is clear that he didn't really care about who got in his way.

As a case in point, consider the privacy of the children in Wakefield's study.  Last year, I wrote about Mr. Deer's claims that he had the medical records of all twelve children involved in the study.  I noted at the time that he should not have, use, or publicly discuss the contents of the records without the consent of the parents or the patients themselves.  I wondered how he could have obtained access to the records.

Now, thanks to Deer's own words, we know that he obtained the records because Wakfield sued him for defamation.  I think it goes without saying that the parents nor the children consented to the records being turned over to him.  And notice the apparent glee that Deer feels about violating the medical privacy of children.  He seems so fixated on attacking Wakefield that he does not seem to care about the children whom he is using as weapons.

As a parent, I cannot adequately express my outrage at his attitude.  Children - especially children with disabilities such as autism - should not be used as pawns by a journalist, not matter what the circumstances.  Does any parent out there feel differently?

My children have been in two studies so far and I would be absolutely furious if a journalist decided that he or she had some right to my children's medical records because they disagreed with what a researcher said.

Unfortunately, this sort of cavalier attitude fits with other comments that I have seen Deer make.  For example, over two years ago I wrote about him commenting on some disabled children and saying "its no wonder that they have problems with their brains" given what their parents believe.  Here are his exact words -
And they wonder why their children have problems with their brains.
And when he was called on that statement, he elaborated -
Well, actually Joseph, I didn’t intend that observation as an insult. I made it as a shorthand way of raising an issue that I believe may reasonably be raised.
I genuinely think that the three individuals I was criticising – and I know who all three of them are – do need to question whether their personal behavioural issues are indicative of a better explanation for their children’s issues. Certainly a lot better explanation than MMR.
The festering nastiness, the creepy repetitiveness, the weasly, deceitful, obsessiveness, all signal pathology to me.
Deer might have well been describing himself with that last remark.  Wakefield might well have done many things wrong, but Deer is no better.

Tuesday, July 19, 2011

Did Brian Deer Use Deception to Collect Data Included in the BMJ Article?

Flickr photo by Petroglyph
You know, there are certain topics that just won't just quietly slip into the night.  Vaccines and autism is one, too much TV causing autism is another, and then there is the whole Dr.  de-doctored Wakefield and Deer affair.

Before I say anything else, just let me say that this article is not about Wakefield.  I am not trying to imply that I agree, disagree, endorse, or condemn the former doctor.  This article is not about him, so before reading the following please try and put his name and all of the baggage associated with it to the side.

Have a clear mind?  Ok, good.  With your newly cleared mind, ask yourself the following question.  Is it ever acceptable for an article published in a peer-reviewed journal to use deception to obtain data for the article?

According to an article published on Age of Autism, Brian Deer might have done just that in obtaining data included in his "peer-reviewed" article in the BMJ -
What Deer did not say in the BMJ article is that he had lied to the mother about his identity, claiming to be someone named “Brian Lawrence” (his middle name). Deer had written a number of critical articles about parents’ claims of vaccine injury, and if he gave his real name, he doubtless feared, Child 2’s mother would not agree to talk to him. Once she checked his blog, she would be more likely to kick him out of the family home than sit still for what turned into a six-hour inquisition.
He even created a fake e-mail address for his fake identity, and he used it to communicate with her:
Now, I am sure that your first reaction is a yes but.

Yes, but this is Age of Autism and everyone knows that are biased.
Yes, but this is Wakefied we are talking about and he is evil incarnate.
Yes, but whatever other reason you come up with that this either A. never happened or B. is excusable.

Remember, this isn't about Wakefield and two wrongs don't make a right.

A journalist can play fast and loose with the truth and still be considered good enough to be published in the newspaper.  However, the standard for peer-reviewed research is much, much higher.  The standard for research is informed consent - a person has to be given enough information to fully understand exactly is happening and what their options are.

So the question here is one of fact.  Deer was either completely upfront about who he was and why he was doing the interview or he wasn't.

Consider what Deer said about this interview in the article in the BMJ -
I travelled to the family home, 80 miles northeast of London, to hear about child 2 from his mother. That was in September 2003, when the lawsuit fell apart after counsel representing 1500 families said that, on the evidence, Barr’s autism claims would fail.23 By that time, Mrs 2 had seen her son’s medical records and expert reports written for her case at trial.
Her concerns about MMR had been noted by her general practitioner when her son was 6 years old.24 But she told me the boy’s troubles began after his vaccination, which he received at 15 months.25 “He’d scream all night, and he started head banging, which he’d never done before,” she explained.
“When did that begin, do you think?” I asked.
“That began after a couple of months, a few months afterward, but it was still, it was concerning me enough, I remember going back . . .”
“Sorry. I don’t want to be, like, massively pernickety, but was it a few months, or a couple of months?”
“It was more like a few months because he’d had this, kind of, you know, slide down. He wasn’t right. He wasn’t right. Before he started.”
“Not quicker than two months, but not longer than how many months? What are we talking about here?”
“From memory, about six months, I think.” 
The next day, she complained to my editors. She said my methods “seemed more akin to the gutter press.” But I was perplexed by her story, since there was no case in the Lancet that matched her careful account.
From the little bit of information included, it is almost impossible to know what the truth of the matter is.  Deer's admission that the mother did call and complain to Deer's editors about his methods does lend credence to the idea that something he did wasn't exactly on the up and up.

If AoA is correct and Brian Deer did lie about his identity to obtain an interview then, by definition, he used fraud to obtain his "data".  If those "data" were later included in his "peer-reviewed" article, then his article was based, at least in part, on fraud.

It may be impossible to know what exactly happened here, but I can say one thing with absolute certainty - outright fraud has no place in science.  If statements included in the BMJ article were obtained fraudulently then the only ethical choice for the BMJ would be to retract the article.

Think of it this way, if any other peer reviewed article in the BMJ stated that one the subjects in the study had to call and complain about a researcher's conduct, what exactly would you think of the article?  What would you think of the journal that published it?

I know there are a lot of ifs here, but between Deer's statements about the interview, the articles being commissioned by the journal, Deer's inherit bias against Wakefield, the BMJ's admitted failure to disclose a relevant financial conflict of interest, and now the accusation of fraud, this entire affair is starting to stink.

I guess this is what happens when prestigious medical journals consort with tabloid journalists.

Sunday, July 17, 2011

Got Twin Studies?

In light of the recent study showing that the concordance of autism in twins might not be what we think it is, I was going back and looking at historical twin studies.  Specifically, I am looking for older studies that -
  1. Compared identical (MZ) twins to fraternal (DZ) twins. 
  2. Compared the concordance of actual autism diagnoses using an established diagnostic test.
  3. Had some way of determining which twins were identical or fraternal without having to resort to estimates.
There are plenty of studies that compare "autistic traits" in twins (I found at least 11 of these) but surprising few that look like they would meet the criteria above.  So far I have found these - 
  • Folstein, S, and M Rutter. 1977. “Infantile autism: a genetic study of 21 twin pairs.” Journal of child psychology and psychiatry, and allied disciplines 18:297-321. 
  • Ritvo, ER, B J Freeman, A Mason-Brothers, A Mo, and AM Ritvo. 1985. “Concordance for the syndrome of autism in 40 pairs of afflicted twins.” The American journal of psychiatry 142:74-7. 
  • Steffenburg, S et al. 1989. “A twin study of autism in Denmark, Finland, Iceland, Norway and Sweden.” Journal of child psychology and psychiatry, and allied disciplines 30:405-16.
  • Bailey, A et al. 1995. “Autism as a strongly genetic disorder: evidence from a British twin study.” Psychological medicine 25:63-77.
  • Kees, E.K., Hefter, R.L., Klaver, J., Schweigert, S.A., Arneson, C., Gernsbacher, M.A., & Goldsmith, H.H. (2005, June). Twin concordance for the autism spectrum based on community diagnoses and screening of a birth cohort. Behavior Genetics, 35, 809. (abstract)
  • Taniai, Hiroko, Takeshi Nishiyama, Taishi Miyachi, Masayuki Imaeda, and Satoshi Sumi. 2008. “Genetic influences on the broad spectrum of autism: study of proband-ascertained twins.” American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics 147B:844-9. 
  • Schweigert,E. K., Gernsbacher,M. A., Hefter,R. L., Gottesman, I. I., Goldsmith, H. H.  (2009, May).  Twin Concordance for Autism: a Comparison of Multiple Diagnostic Criteria in a Population-Based Twin Study.  INSAR Poster.
  • Rosenberg, Rebecca E et al. 2009. “Characteristics and concordance of autism spectrum disorders among 277 twin pairs.” Archives of pediatrics & adolescent medicine 163:907-14.
  • Hallmayer, Joachim et al. 2011. “Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism.” Archives of general psychiatry 1-8. (Accessed July 10, 2011).
Does anyone know of any others?

Thursday, July 14, 2011

Study : The ongoing dissection of the genetic architecture of Autistic Spectrum Disorder

A paper was published this week that reviews the history and current status of the search for the genetic component of autism.  Since the the genetics of autism has been getting a lot of attention this week, I though it might be appropriate to point this one out.  If you have any questions about the search for the elusive genetic component of autism, you will want to read this paper.

The paper is open access so the full text is freely available.

The ongoing dissection of the genetic architecture of Autistic Spectrum Disorder
Rob F Gillis and Guy A Rouleau

The development of robust, non-hypothesis based case/control studies has led to a large push forward towards identifying common genetic variants that contribute to complex traits. However, despite many attempts, the search for common disease-predisposing variants in childhood developmental disorders has largely failed. Recently, a role for rare causal variants and de novo mutations is emerging in the genetic architecture of some of these disorders, particularly those which incur a large degree of selection against the phenotype. Here we examine these data as well as use classic genetic epidemiological approaches to gain insights into the genetic architecture of ASD. Future studies using next generation sequencing should elucidate the precise role de novo mutations play in disorders traditionally thought to have resulted from polygenic or common disease, common variants inheritance.

Gillis, Rob F, and Guy a Rouleau. 2011. “The ongoing dissection of the genetic architecture of Autistic Spectrum Disorder.” Molecular autism 2:12.

Wednesday, July 13, 2011

Jabberwocky of the Day : Age of Autism on Smiting

As a parent of three children who suffer from autism, I can fully understand the difficulties and challenges that autism can bring to your life. I can understand that some days it seems like nothing you can do can alter the course of autism or make a dent in the problems that is causes. And I certainly understand that having to deal with autism can monumentally suck for both you and the child who, lets face it, gets the worst of it.

I get all that because autism has been a part of my family's life for many years now. And after all of these years, I think I can say that I truly understand the frustration and occasional hopelessness that that goes with it. I don't think that you can really understand what autism can be like unless you live it day after day.

I get that and so I normally don't comment on what other parents say about their experiences. I understand that these parents are under tremendous stress and are simply trying the best they can to deal with an unfortunate situation.

But (you knew that was coming, right?), there are times when someone takes it too far. In my opinion, Kent Heckenlively did just that in a post over at Age of Autism entitled "When I Can Do Nothing".  In this post, Mr Heckenlively talks about his feelings of helplessness when it comes to the getting the world to accept his view of autism. He talks about how he has turned to religion to help him deal with his inability to make a difference. He says, in part -
I've been very busy lately.
Unfortunately, I can't talk much about it. What I can say is that on some level, my prayers to God for an understanding of the autism epidemic have been answered. I now know why they fear us so much. I can't prove it, and as a lawyer I understand that's the real show. But I know.
And yet, as thankful as I am for an understanding of what has happened to my child and so many others, my heart is heavy. The Dark Forces which in the past have destroyed the careers of those who have found clues to the afflictions of our children and other disease communities are once again on the move. You may very well read about their actions this week. And I can't do anything to stop them.
He goes on to talk about Stephen King's book The Stand and talks about how the forces of good in that book fought against the forces of evil. And from there he goes on to quote Psalm 94 from the Bible, a passage entitled "A Prayer for Vengeance".

I think the message he is trying to get across is pretty clear.

Now, I have absolutely no problem with religion or someone turning to religion to help them through a difficult time. It isn't my cup of tea, but I can understand why some people are religious and take comfort from their beliefs. But here is the problem.

There is no enemy here to smite.
There are no "Dark Forces".
There is no vast conspiracy to cause autism or to cover-up the cause of autism.

What there is is a large number of people who are doing what they think is the right thing. You might not agree with what they are doing and you might think that be acting out of their own self-interests. And who knows, you could be right.

But there is no demonic Randall Flagg who is in need of smiting.  There are just mostly good people doing what they feel is the right thing to do.  Which is exactly the same as what most parents do.

I can understand that scientific progress towards understanding exactly what autism is can be painfully slow. I can understand that, after over thirty years worth of research, science is not much closer to understanding what autism is let alone understanding how to fix it.

But the answer is to work together to try and advance our understanding and to help those that we can deal with the problems that autism causes. The answer is not to retreat into religion platitudes and to encourage your readers to engage in some holy war.

Doing that makes you look like you are nothing more than a cult.

Tuesday, July 12, 2011

Study : Perinatal and Neonatal Risk Factors for Autism

I thought this study was interesting in light of the recent twin study suggesting that the environment may play a role in developing autism.  The bottom line here seems to be that there isn't any known perinatal or neonatal factor that plays a large role in developing autism.

Perinatal and Neonatal Risk Factors for Autism: A Comprehensive Meta-Analysis
Hannah Gardener, ScD, Donna Spiegelman, ScD, Stephen L. Buka, ScD

Background: The etiology of autism is unknown, although perinatal and neonatal exposures have been the focus of epidemiologic research for over 40 years.

Objective: To provide the first review and meta-analysis of the association between perinatal and neonatal factors and autism risk.

Methods: PubMed, Embase, and PsycInfo databases were searched for studies that examined the association between perinatal and neonatal factors and autism through March 2007. Forty studies were eligible for the meta-analysis. For each exposure, a summary effect estimate was calculated using a random-effects model. Heterogeneity in effect estimates across studies was examined, and, if found, a meta-regression was conducted to identify measured methodological factors that could explain between-study variability.

Results: Over 60 perinatal and neonatal factors were examined. Factors associated with autism risk in the meta-analysis were abnormal presentation, umbilical-cord complications, fetal distress, birth injury or trauma, multiple birth, maternal hemorrhage, summer birth, low birth weight, small for gestational age, congenital malformation, low 5-minute Apgar score, feeding difficulties, meconium aspiration, neonatal anemia, ABO or Rh incompatibility, and hyperbilirubinemia. Factors not associated with autism risk included anesthesia, assisted vaginal delivery, postterm birth, high birth weight, and head circumference.


Monday, July 11, 2011

Study : Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism

As I talked about last time, a new twin study entitled "Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism" was published earlier this month.  Since this is probably going to be a memorable study, I thought I would go into exactly that it did and didn't show.

First of all, the study and an accompanying editorial are open access so the full text is freely available.  If you are interested in the subject, I strongly suggest you go read both for yourself (see links at the bottom of this post).

The purpose of this study was to look at how common it is for identical and fraternal twins to both have autism.  The conventional wisdom up to this point has been that if one identical twin has autism the other is almost certain to have it while if one fraternal twin has autism the other has roughly the same risk as any other sibling.

To that end, researchers used the records from California's Department of Developmental Services (DDS) to identity all twins both between the years of 1987 and 2004 where at least one of the twins had a qualifying diagnosis of autism.  A qualifying diagnosis was either receiving services for autism, a code that indicated suspected autism, an actual diagnosis of autism, a code indicating intellectual disability of an unknown source, or another developmental disability.

A set of twins was eligible to be included in this study if the mother lived in California at the time of birth, at least one of the parents could read and speak either Spanish or English, both twins were currently living in California, both twins had a mental age of at least 18 months, and there was no history in either twin of "neurogenetic conditions that might account for autism" (such as fragile x, down syndrome, or tuberous sclerosis).

A total of 1,156 twin pairs met the these criteria.

Of these twins, 384 could not be contacted, 330 declined to participant, and 10 pairs were ineligible (not sure why), leaving 432 pairs of twins.  Of these twins, 90 additional pairs declined to participate leaving 342 pairs (by my calculations at least, the study text has 333) that could have been evaluated in the study.

In the end, 202 out of the initial 1,156 twin pairs were evaluated.  Each twin was evaluated with both the ADOS and ADI-R to establish whether they had either a narrow form of autism (autism), a broad one (asd), or no form of autism.  These groupings would roughly correspond to classic autism (narrow) and pdd-nos and/or Aspergers (asd).  The criteria that were used to group the twins into these groups were pretty conservative.  In order to be included in either autism group both the ADOS and ADI-R had agree.

After the evaluation, another 10 twin pairs were excluded because neither twin met the definition of even the broad form of autism.  This brings the total number down to 192 twins pairs.

As an aside, if you look in the supplemental material you can see that the majority of the twin pairs excluded (6 out of 10) had received services for "full spectrum autism" and another for "suspected autism".  The study doesn't say whether it was one or both twins that had the diagnosis, but the fact that at least some some of this children once had a diagnosis of autism but no longer is yet more confirmation that it is possible to loose the label.

Although on the flip side, the researchers did diagnosis some of the twins with autism who did not have a diagnosis before.  Which shows that it is possible for autism to be missed even when another child in the family is one the spectrum.

But getting back to the study, each of the remaining 192 pairs of twins were genetically tested to determine whether they were identical (MZ) or fraternal (DZ) twins.

For those of you who don't know, MZ twins come from one fertilized egg that, for reasons unknown, splits into two organisms sometime in the first two weeks after fertilization.  Identical twins are, by definition, genetically identical - at least up until the point that they separate from each other.  DZ twins happen when two eggs are fertilized at the same time and are basically the same as siblings except that they are conceived and born at the same time.

There are a few other important differences between MZ and DZ twins to be aware of.  MZ twins normally share more prenatal resources (placenta and amniotic sacs) than DZ twins do.  MZ twins are basically random and happen in all races around the world in about 1 out of 250 pregnancies.  DZ twins, on the other hand, are strongly dependent on the mother's age, race, and family history.  The chance of having DZ twins goes up as the mother gets older and the rate of DZ twinning can vary pretty drastically depending on where you look.

So, out of the 192 sets of twins, 45 were found to be male-male identical twins, 9 female-female identical twins, 45 male-male fraternal twins, 13 female-female fraternal twins, and the last 80 were male-female fraternal twins.

The researchers then looked at how many of each twin pair either both had a narrow version of autism or a broad one in common.  The results were somewhat surprising.  The following numbers are in terms of how many of the twin pairs both had the condition (pairwise) rather than the more confusing notion of probandwise.  If you want to see the numbers the other way, look at table 2 in the study text.

In the male-male identical twins -
42.5% both met both met the criteria for strict autism
64.4% both met both met the criteria for broad autism

In female-female identical twins -
42.9% both met both met the criteria for strict autism
33.3% both met both met the criteria for broad autism

In male-male fraternal twins -
12.9% both met both met the criteria for strict autism
20.0% both met both met the criteria for broad autism

In female-female fraternal twins -
20.0% both met both met the criteria for strict autism
30.8% both met both met the criteria for broad autism

In male-female fraternal twins -
3.6% both met both met the criteria for strict autism
6.3% both met both met the criteria for broad autism

There are few notable things about these numbers.

First, the concordance rate for male and female identical twins is lower than would be expected from other estimates in the past.

Second, the concordance rate for same sex fraternal twins is much higher than would be expected.

Third, if you look at the difference between identical and fraternal female-female twins and compare that to the number for male-female fraternal twins, you will see something odd.  It looks like having a female co-twin instead of a male greatly increases your chance of having autism.  I could understand that happening with identical twins but I don't understand why fraternal twins have the same result.  This might just be a result of having a small number of female-female twins (22) but I am skeptical.

Finally, the concordance between opposite sex fraternal twins should give us a good baseline of where typical siblings would fall using the same criteria.  It isn't an exact comparison because there are risk factors associated with twin births (maternal age, prenatal complications, premature birth) that have been shown to increase the risk of autism.  This range of concordance (3 to 6) agrees with other non-twin sibling results in the past.

The researchers used a variety of statistical models which took into account a number of different factors in an attempt to explain the results.  They also cross checked the twins who participated in the study against those who didn't to ensure that they didn't get a biased sample.  They found no glaring problem that they could see, so their conclusion, in their own words, was -

The results suggest that environmental factors common to twins explain about 55% of the liability to autism. Although genetic factors also play an important role, they are of substantially lower magnitude than estimates from prior twin studies of autism.  Nearly identical estimates emerged for ASD, suggesting that ASD presents the same liability spectrum as strict autism.

On in other words, the researchers think that their data shows that autism is more environmental than genetic.  This result is obviously at odds with what other twin studies have shown and some consider it to be controversial.

Now, there are a few possible problems with the study.

First, a substantial part of the twin population did not participant in this study.  It is possible that the twins that did participate were not representative of the entire twin population or that there was something different about the twins who did participant.

Second, the number of identical twins in the sample is rather small.  If there was any skewing in which twins participated, it could have been amplified by having only 54 identical twin pairs in the study.  On the other hand, not many other studies in the past have had even 54 confirmed sets of identical twins.

Third, the study excluded known genetic causes of autism.  Doing so could have artificially lowered the number of identical twins who both had autism because both identical twins would presumably have the same genetic problem and could have raised the number fraternal twins who did so because, again presumably, fraternal twins who would not have been co-morbid for this other defect were excluded.

Finally, it is possible that the results could be explained by some risk factor specific to twins.  All types of twins are more likely to have prenatal problems, be born premature, or have a lower birth weight.  All of these factors are thought to increase the risk of autism.  Fraternal twins are far more likely to be born to older mothers than either identical twins or non-twin siblings.  Older maternal age is also another risk for autism.

However, if this were a major factor, I would have expected the concordance of opposite sex twin pairs to be much higher than it was.  This is the largest single group of twins included in the study and yet it has the lowest concordance.

There are a few strengths of the study as well.

First, the twins included in this study were a sample drawn from a large population and should be more representative of twins in the general population than other studies in the past.  California's DDS is thought to serve the majority (greater than 80%) of children with autism in the state, so it is likely the initial sample included the majority of twins with autism born during the relevant period.

Second, each pair of twins included in the analysis were genetically tested to see whether they were identical or fraternal twins.  Other recent twin studies have either relied on parental reports or have used estimates to determine which twins were fraternal and which were identical.  Both of these methods suffer from serious flaws that could easily miscategorize identical twins as fraternal or fraternal twins as identical.

The only reliable way to tell the difference between the two types of twins is if they are the opposite sex or if they are genetically tested.

Finally, this study used a far more rigorous and conservative way of determining which twins had autism than did past studies.  This may have caused the concordance numbers to be lower than they would under a broader definition, but if it did that would bump the numbers for the fraternal twins as well as the identical ones.

All in all, this is a pretty solid study that casts doubt on the idea that autism is primarily a genetic condition.


1. Hallmayer, Joachim et al. 2011. “Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism.” Archives of general psychiatry 1-8.
DOI : 10.1001/archgenpsychiatry.2011.76

2. Szatmari, Peter. 2011. “Is Autism, at Least in Part, a Disorder of Fetal Programming?” Archives of general psychiatry 1-2.
DOI : 10.1001/archgenpsychiatry.2011.99

Sunday, July 10, 2011

Autism in Twins : The World Isn't Flat

Earlier this month a paper1 was published that took (yet) another look at autism in twins and found that autism might not be as "genetic" as once thought.

In a nutshell, this paper found that the number of identical twins who both have autism is lower and the number of fraternal twins who both have autism is significantly higher than once thought.  When you consider the findings separately or together, it all points to the fact that environmental factors play a far larger role in autism than was previously thought.

I think the most surprising thing about this study for me is how many people seem to be taken off guard by this finding.  This isn't the first recent twin study to show at least some of these results.  In fact, I wrote about one that suggested that autism was far more common in fraternal twins than was thought almost two years ago.

But even ignoring recent twin studies, the purely genetic model has, even after decades of searching, failed to find any mutations that could account for more than an minority of cases of autism.  As each passing study not only failed to find any single mutation that could account for more than a small handful of case but also (mostly) failed to confirm the small mutations from the last study, it became clear (at least to me) that genetics alone could not determine whether someone developed autism.

Sure, you can take all of the prior studies together, put on your optimistic glasses, and say that you might be able to point to the genetic "cause" for up to 30% of all cases2 of autism.  But that presumes that each of the individual "causes" that have been identified are in fact causes and not simply random chance.  It also assumes that a given person would only have one of these "causes".  Since most of these "causes" have been identified in only an extremely small group of people, I think it is far more likely that most of these mutations are simply chance and have nothing to do causing autism.

But, for the sake of argument, lets say that you could take a random group of 100 people with autism and find the genetic "cause" in 30 of them.  That would still leave the overwhelming majority of cases without a known cause.  What does it say when about the correctness of a theory when it fails to account for the majority of cases?

In most of science, if you had a hypothesis that has failed to be confirmed by hundreds of studies over several decades, that would be called a failed hypothesis.  But when it comes to autism, that is called the prevailing theory.  And the reason that this theory has survived is the results of past twin studies that found that autism seemed to be mostly genetic.

Enter the current study that very meticulously shows that identical twins often don't share their autism and that fraternal twins do so more than other siblings.  These findings have effectively taken out the foundation that the genetic only theory of autism was based on.  So when you consider that not only has the genetic theory failed to find any major results but also that it might rest on a flawed foundation, I think it is very clear that the theory is dead in the water.

Now, before anyone takes this the wrong way, it is still obvious that there are genetic causes of autism and that genetics does still play a large role in developing autism.  However, we can now say (with an almost certainty) that environmental factors also play a large role.

The world of autism is no longer flat.


1. Hallmayer, Joachim et al. 2011. “Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism.” Archives of general psychiatry 1-8.
DOI : 10.1001/archgenpsychiatry.2011.76

2. Schaaf, Christian P, and Huda Y Zoghbi. 2011. “Solving the autism puzzle a few pieces at a time.” Neuron 70:806-8.
DOI : 10.1016/j.neuron.2011.05.025

Tuesday, July 5, 2011

The Need For Awareness and Acceptance

There is often talk in the autism world about the need for more awareness and acceptance of people with autism.  But what exactly is meant by awareness and acceptance changes depending on who is doing the talking and what group they are talking for.  If you spend any time at all listening to what all of the various groups want, you would come to the conclusion that there is an entire spectrum of what exactly awareness and acceptance means.

But one thing that I feel gets overlooked most of the time is basic awareness of what autism is (and isn't) and the acceptance of the fact that, some of the time, people with autism are not able to properly react to a given situation.  There are going to be times when a person with autism is not going to be able to control themselves and they are going to have a meltdown.  Or they are going to act in such a way that could cause problems for themselves and others.

The general public just doesn't get it and that is a problem.  A problem that is mostly overlooked by the autism self-advocacy and neurodiversity groups.

Take for example an opinion piece that appeared today on CNN entitled "Permissive parents: Curb your brats".  In this lovely article, LZ Granderson exudes acceptance and awareness as he prattles on about how parents need to control their children better -
If you're the kind of parent who allows your 5-year-old to run rampant in public places like restaurants, I have what could be some rather disturbing news for you.
I do not love your child.
The rest of the country does not love your child either.
And the reason why we're staring at you every other bite is not because we're acknowledging some sort of mutual understanding that kids will be kids but rather we want to kill you for letting your brat ruin our dinner.
Or our plane ride.
Or trip to the grocery store.
Or the other adult-oriented establishments you've unilaterally decided will serve as an extension of your toddler's playpen because you lack the fortitude to properly discipline them, in public and at home.
He goes on like that for some time.  In a way, he does have a point.  We have all run across parents who seem unwilling or able to control their children.  But then again, there is also a large group of children (perhaps as many as 1 in 10) that have "invisible" disabilities such as autism or ADHD that hamper their ability to properly behave in public.  These children look "normal" but have very real problems that they need help with.

But Mr. Granderson seems to be in such a rush to judge that he doesn't stop to consider that fact.  He doesn't seem to understand that, sometimes, parents are doing the best that they can to manage their child's behaviors.  Nor does he seem to understand that sometimes you have to let the child misbehave, scream, or cry in public in order to break them of the behaviors.

There was a time a few years back when we were glared at every time we went into public.  Back then, twin B decided that she wasn't going to walk in public and she didn't want to go into any store.

Obviously, that was somewhat of a problem and we had two choices on how to handle it.  We could either stay at home and hope that someday she would learn how to deal with walking in public and being in a store or we could push ahead with going out and teach her how to deal.

We chose the second option and, for the next few months, we tried a variety of approaches to help her deal with her problem.  During that time I could frequently be spotted trying different ways to get her to walk or pushing a cart with a child screaming bloody murder at the top of her voice  (as an aside, during this time we learned that she has very health lungs and an extremely good vocal range).

To make a long story short, we eventually found ways to break through the behaviors and now she will walk in public and go into any store without even a whimper.  But for a while there, it was a little rough and we were on the receiving end of a lot of angry glares.

I imagine that if we would have run into Mr. Granderson he would have given us "the look" for daring to inconvenience whatever it was that he was doing. By his way of thinking, we should have kept Twin B at home until we had disciplined her enough so she knew to behave in public.

But what he doesn't seem to be aware of is the fact that the only way that we were going to stop the behavior was by going into the environment that triggered it.  You simply can't address a location specific problem without going to the location.

What he also doesn't seem to realize is that you can use "the look" as much as you want on some children with autism - it just doesn't work.  Many children with autism simply don't process facial expressions well enough or don't process them well enough in stressful situations for that to be an effective method.

And other forms of traditional discipline can be almost as worthless.  If you want to have a good time, try putting a child with vocal stims in timeout.  They won't care because they can amuse themselves for hours with just the sound of their own voice.

Mr. Granderson clearly lacks the awareness of what exactly is involved in dealing with autism and I am not sure that he would accept it even if he heard it. But if you think that Mr. Granderson's ignorance is bad, try reading the comments on the article.  I think this one my favorite -
Talk about needing some awareness.  I would love to be able to drop on my children off at this person's house for a weekend and see if he changes his mind about autism by Monday.  However, I like my children enough to not want to subject them to this idiot.

However, people like this are really just an annoyance that parents of children with autism need to deal with.  I find that, for me, simply standing your ground and glaring back takes care of most of these people.

Unfortunately, there are other times when awareness literally means the difference between life and death.  Such as this story out of Florida -
Largo, Florida - Police called out to a domestic disturbance Thursday say they were forced to shoot and kill an 18-year-old man armed with a knife shortly after entering the apartment he shared with his mother.
Nicholas Pesare had Asperger's Syndrome, a form of autism, and difficulty with social interaction. His mother, Anne Polce, says she called officers hoping they would take him to a mental evaluation center for medication. Instead, she says two officers walked into her apartment and, within seconds, there were three gunshots and her son was dead.
Based on the little bit of information that is available, I don't think this young man had to die.  If the police had had a better idea of how to deal with an autistic meltdown then perhaps Nicholas would still be alive.

This is definitely an area were more awareness of exactly what autism is could save lives.  Emergency personal and police need better training on what to do when dealing all types of autism - from non-verbal children to sometimes violent young adults, and everything in between.  It is literally a matter of life and death.

Sunday, July 3, 2011

People With Autism Don't Have X-Ray Vision After All

As reported by Neuroskeptic and Cracking the enigma, a new study shows that people with autism don't have any special visual abilities after all.  I don't think I can add anything to the explanation of the initial report and the circumstances of the current follow-up study since both of the other sites have done such a good job of explaining the details.

The only question I do have is why this whole situation arose at all.  How did a study that claimed that -
Individuals with ASC have significantly better visual acuity (20:7) compared with control subjects (20:13)-acuity so superior that it lies in the region reported for birds of prey
ever get published in the first place?  You don't need to be any sort of skeptic to see that the idea is far-fetched on face value without even looking at the details.

Here's a suggestion to future peer-reviewers - if a study compares any facet of autism to a specialized or  enhanced characteristic of an animal, you might want to look very closely at what the research claims to show. Because chances are it is going to be wrong.

I think the larger issue here is what appears to be a general trend among people who deal with autism - from parents to doctors to therapists to researchers - to want to assign some sort of special gift to people who have autism.

Why do people look at the sensory issues in autism and try and prove that the sensory issues are actually a good thing because they can see or hear or touch better than the rest of us?  Is that supposed to make up for the fact that the distortion of the other senses must be almost torture to live with?

Why do people think about the repetitive and restricted interests in autism and decide that it is a blessing because they have strong interests that they can really focus on?  I can really focus on a topic when I want to and can really push myself to become extremely knowledgeable about it.  But I also have the freedom to decide to not to pay attention to it and to focus on something else.  I don't know that people with autism have that same freedom.

Why is it that people who are otherwise very rational take a look at people who have the disability known as autism and decide that they must have some special gift to go along with the autism?  In my experience, people with autism have the exact same proportion of special gifts that the rest of the population does.

Are the gifts commented on more because they stand out because of the stark contrast between the area of gift and the autism effected areas?  Or is it that people in the field want to focus on the gifts to make themselves feel better about the whole autism thing?

Why is there all of this romancing the spectrum and how does this nonsense make its way into the published scientific literature?

I just don't get it.

Saturday, July 2, 2011

Prenatal Vitamins and Parental Responsibility

Flickr photo by beautifulcataya
If you really want to piss off a parent whose child has autism, just tell them that they are in some way responsible for their child's condition.  That accusation takes us back to the bad old days of autism when the prevailing theory was that autism was caused by cold and uncaring parents.

Fortunately, that sort of thinking has disappeared from the medical world and only survives in ignorance of the general public.  Or has it?

As Harold Doherty pointed out on Facing Autism in New Brunswick, a "science" blogger by the name of Harriet Hall, MD (aka SkepDoc) seems to have just suggested that parents, mothers specifically, are responsible for their children's autism.

The statements that I am talking about come in the context of a recent study that found that prenatal vitamins may decrease the risk of autism when taken during the 3 months before or the first month of the pregnancy.  The results of the study are somewhat confusing, to say the least.  On the one hand, the study seems to say that the simple act of taking prenatal vitamins before pregnancy might help to prevent autism.

But then you have to consider that another study suggested that prenatal vitamin use during pregnancy was associated with a greater risk of autism.  And then there is the fact that, over the past several decades, prenatal vitamin use has become much more common (at least in the U.S.).  So if prenatal vitamin use played a large role in autism, I would expect that the rate of autism would have dropped as prenatal vitamin use increased, which certainly hasn't happened.

I also have to wonder if the study controlled for whether the pregnancy was planned or unplanned.  It is much more likely that the mother would be taking prenatal vitamins if the pregnancy were planned than if it weren't.  I haven't read the full text of the study and the abstract doesn't specify whether that was taken into account.  If it wasn't taken into account then I suspect that could account for the results of the study.

But back to the point.  In the context of talking about this study, Dr. Hall had this to say -
How will the anti-vaccine contingent react to this new study? It was convenient and satisfying for parents to be able to blame vaccines and accuse the evil medical establishment of causing their children’s autism. Now will those parents accept that at least part of the responsibility lies with their own genetic contributions and the mother’s actions prior to pregnancy? That’s not as palatable a thought, but it’s more realistic.
In this context, the word "responsibility" says that parent's are responsible for their child's autism.  Responsible, according to, means -
  1. answerable or accountable, as for something within one's power, control, or management (often followed by to  or for ): He is responsible to the president for his decisions.
  2. involving accountability or responsibility: a responsible position.
  3. chargeable with being the author, cause, or occasion of something (usually followed by for ): Termites were responsible for the damage.
  4. having a capacity for moral decisions and therefore accountable; capable of rational thought or action: The defendant is not responsible for his actions.
The core idea behind the word in this context is that the parent had the ability to control a situation and so the result of the situation is because of what the parent did or didn't do.

So back to Dr. Hall's statements.

The idea that a parent is "responsible" for their "genetic contributions" just doesn't make sense.  A person has no ability to control their genetic code nor can they make any impact on which parts of it are passed onto their children.  The only decision that you can make in regards to your genetic code is whether to have children or not.  So the only "responsibility" here is the decision to have a child in the first place.

Perhaps more to the point, if a parent has some unknown genetic mutation that interacts with some unknown environmental influence, are they "responsible" for the outcome of that interaction even if they have no knowledge (or way of knowing) about either factor?  I don't think so.

The second part of the idea is that the mother is "responsible" for their actions prior to the pregnancy and this is true, to a point.  If you do something during (or before) the pregnancy knowing that it will harm the child, then you are responsible for the outcome.

But if you have no idea that a specific action or inaction can lead to an outcome like autism, can you really be "responsible" for the outcome?  The word "responsible" implies a choice as well as the ability to control.  If you have no knowledge that there even is a choice to be made or that you can control the outcome, can you be "responsible" for the outcome?

In general, that question is hard to answer.  However, when you are talking about evidence based medicine, the answer is simple.

In evidence based medicine, the only things that you should be doing (medically) are those things that are supported by the evidence.  If there is no evidence to support the action, then you shouldn't be doing it.  So, under evidence based medicine, can you really say that someone is "responsible" for failing to take an action that is not supported by evidence?

I think the answer is an obvious no.

So how can a science (aka evidence-based medicine) blogger such as Dr. Hall cast "responsibly" onto a parent for listening to what evidence based medicine has to say?  And do we really want to let medical doctors get back into the habit of blaming the parents for their child's autism?