I’m currently attending IMFAR. I’m taking notes and hope to get posts out quickly. I’d strongly recommend following Shannon Rosa. She’s tweeting and live blogging the conference. She’s on twitter and The Thinking Person’s Guide to Autism.
So what do parents really think causes autism?
12 MayAccording to the MIND institute, presenting at IMFAR:
The two most common causes of autism cited among all parents was an environmental cause (51%) and/or a genetic cause (51%). Vaccines (22%) were the third most commonly believed etiological factor, followed by 20% of parents who did not know or have a guess as to what may cause autism.
This is an interesting set of results to me. I’m frequently told that the overwhelming majority of parents believe vaccines cause autism. Turns out less than a quarter do.
Also of interest was the following statement:
Vaccines are commonly cited as a cause by parents in all ethnic groups despite a clear lack of scientific evidence demonstrating a relationship between autism and either the measles, mumps, rubella (MMR) vaccine, or thimerosal containing vaccines
Wasn’t that long ago that autism anti-vaxxer supermo Rick Rollens was basically in charge of MIND. How times have changed.
IMFAR 2011: the press conference (part 1)
11 MayThe International Meeting for Autism Research starts tomorrow. There are some preliminary sessions ongoing today, including the press conference.
For the press conference, a small group of researchers were singled out and gave advance summaries of their work. David Amaral of U.C. Davis is the president of INSAR (the International Society for Autism Research) and hosted the press conference.
Eric Courchesne, Antonio Hardan, David Mandell, and Irva Hertz-Picciotto gave presentations and answered questions from the panel. Marsha Mailick Seltzer was also listed in the press book and was available, but did not give a presentation.
Amaral gave an introduction. This is the 10th IMFAR, and they returned to San Diego, where the first conference was held. The fist conference had 250 attendees. This one will have about 2,000. He stressed the focus on research into causes and treatment, the wide range of studies including environmental causation, and the strong passion and excitement of the researchers.
Eric Courchesne discussed some very exciting work his team is presenting. The first abstract highlighted was: Abnormally Accelerated Development of Higher-Order Long-Distance Cerebral Tracts In ASD Infants and Toddlers. They are looking ath the neural underpinnings of autism. They studied 39 ASD and 23 non-ASD children, aged 12-40 months through MRI. This is the largest diffusion tensor MRI study in autism so far. They were able to identify children so young due to the recent methodologies put out in Pediatrics.
They found a number of interesting results. They looked at specific bundles of of nerves involved in long-range connectivity within the brain. Connectivity between the temperal lobe and limbic system (e.g. amygdala) are different amongst autistics from very early on. They looked at a measure called “fractional anisotropy”, or FA. For young autistics, FA is high. FA grows with time (it is a measure of maturity), but it grows slower than for non ASD kids. Result–FA is high for young (<30 month old) children, but low for older autistics. This is consistent with earlier work showing lower maturity (FA) for older autistics.
During questions, there was much dicussion of other aspects of Dr. Courchesne's research. There is a 2x increase in brain cells in the frontal cortex in very young autistics. This points to causation, at least for a large group, in very early events. There is also evidence from post mortem studies giving genetic evidence of dysregulation of functions that regularte cell number, cell migration, patternng of the brain, left/right brain symmetry and other factors of the brain. Not only are there differences in genetic expression and genetic pathways, but they are age dependent.
This brings up an important point for future research efforts. Researchers need to be aware that so many factors could be age dependent. Also, this gives some insight into possible developmental trajectories that the brain may undergoe. It was posited that the
The idea that FA starts out higher is new and presents a possible mechanism for different brain development in autistics. It was posited that the early structure of the autistic brain could result in the different developmental path.
On a related topic in the questions, I believe it was from David Amaral, it was noted that "precocious" brain growth is associated with regression. While it is known that large head diameters are common amongst autistics, changes in brain growth are observable as early in 4-6 months of age, well before the regression occurs.
And that's just the first person in the panel! I will get to the rest of the press conference shortly.
PACE study confirms autism prevalence
11 MayThe legal study published by anti-vaxxers and law students yesterday claims that 80 cases show definite autism. If we accept that as true (which I don’t, but there we go) this is an autism prevalence amongst the population of claimants of just over 3%. As we all know, a recent study puts the Korean prevalence as just under 3%. Close enough on behalf of the legal claims, when we allow for their dodgy definitions to be a match.
Or maybe we can be a little more exact. As Kim Wombles noted yesterday, 39 cases confirmed beyond parental anecdote equals a prevalence of 1.5%. Half a percentage over the UK official prevalence.
So what does this mean? It basically means that all things being equal, whichever prevalence figures you like to use (Korean or UK), this law study shows that amongst the population of claimants, there are no more autistic people than one would expect.
But surely, what we should be looking at is if vaccines caused autism in these cases?
OK, lets do that (thanks to Sullivan for spotting these):
From the paper:
[R]espondent’s report. . .suggests vaguely. . .that Kenny’s problems ‘can be attributed in part to other causes such as a family history of epilepsy, autism and tonsillar hypotrophy. . .Dr. Spiro did not even purport to know what did cause Kenny’s seizure disorder;? his basic point was that in his view the DTP did not cause it.”
From the case notes:
In this regard, respondent’s report (filed September 7, 1990) suggests vaguely (p. 5) that Kenny’s problems “can be attributed in part to other causes such as a family history [*18] of epilepsy, autism and tonsillar hypotrophy.” But in the attached expert report, upon which respondent based that assertion, Dr. Spiro candidly admitted (p. 2) that he can only “speculate” as to such possibilities. And certainly at the hearing, Dr. Spiro did not even purport to know what did cause Kenny’s seizure disorder; his basic point was that in his view the DTP did not cause it.
While Dr. Kaufhold notes Dr. Schmidt’s initial impression of infantile autism, she does not list autism among her impressions, but rather says Travis is significantly developmentally delayed to a degree not yet ascertained. Other medical personnel appear to use the term “autism” or “autistic” synonymously with “aphasia” or the absence of the ability
to speak. See, e.g., Pet. Ex. 7 at 148; Pet. Ex. 7 at 208; Pet. Ex. 7 at 393.
Here is an interesting statement:
While Dr. Schultz believes that Travis suffers from some autistic-like features, he does not now nor has he ever believed that Travis suffers from true autism.
In this case, Dr. Schultz is the doctor of the petitioner: Travis Underwood. Travis is child 7 in the PACE table. Here is how Holland et al. quoted that decision:
“In addition, respondent noted that Travis’ medical records indicate that he suffered from mental retardation and autism. These conditions, according to respondent, are not related to the residual seizure disorder.”
Dr. Schultz also said:
Moreover, Dr. Schultz testified that Travis is distinguishable from children with true autism because he (1) seeks affection; (2) makes eye contact; (3) doesn’t require sameness in routine as usually found with autistic children; and (4) doesn’t engage in twirling, flinging and other self-stimulatory behaviors to the same degree as autistic children.
So, next time someone tells you ‘autistic-like’ features or ‘features of autism’ are the same things as autism, tell them to look at the cases in question.
Student mags and altered press releases
10 MayLisa Jo Rudy at autism.about.com received, as did a lot of us, a press release that stated:
Investigators from Pace Law School in New York will be joined by parents and children with autism to announce a groundbreaking study that strongly suggests a link between vaccines and autism on Tuesday, May 10 at 12:00 pm in front of the US Court of Claims (717 Madison Place in Washington DC).
Lisa Jo looked a little deeper and asked this ‘major law school’ for their statement on the matter, she discovered:
According to the Pace Law School, no one from the school was involved with the investigation, nor did anyone from the law school take part in the presentation. In addition, it is important to note, the Pace Environmental Law Review is a student run publication. What’s more, all of the investigators involved with this publication and presentation represent clients who have claims on behalf of family members in the Vaccine Injury Compensation Program.
At that point Lisa Jo tactfully refrains from wondering why and how this situation could’ve arisen. Visit her blog for more information at the link above.
When the science fails you, turn to the legal option
10 MayA news conference today will confirm that autism/anti-vaccine groups have lost the scientific battle for the idea that vaccines cause autism as they turn to the legal battle instead.
…a new report in a New York law school journal, the Pace Environmental Law Review, could reignite the often-inflammatory debate over the issue. Based on a sampling of cases in which plaintiffs won settlements or awards in vaccine court, the authors found that many of the victims demonstrated evidence of autism – even though, perhaps as a legal tactic, their lawsuits emphasized other injuries.
Readers of this site might be forgiven for looking and yawning – here we go again. This is nothing but re-hash of already discussed material. But lets look at the main claim of this issue:
Of the 170 cases the report’s authors examined, 32, or 19 percent, provided documented evidence of autism or autism-like symptoms. The evidence in some cases included findings by the court that the children had autism, “autism-like symptoms” or “symptoms and behavior consistent with autism.” In other situations, third-party medical, educational or other court records confirmed an autistic disorder.
The report – at least in this news story – doesn’t seem to mention how many children were compensated for having autism. As we all kow ‘autism like symptoms’ or ‘symptoms and behavior consistent with autism.’ might be just that – but they are not autism. If they were I’m sure the court would’ve reported it.
And thats not all. Nobody seems to be giving an estimate for how many of these kids actual autism (not autism-like symptoms etc) was actually caused by an actual vaccine.
And thats *still* not all. One of the most problematic issues for this new ‘line of attack’ is this.
Daubert. This is the standard of science that should be used in legal cases. When Daubert is applied, the bottom line is that the best science must be applied. In _none_ of these cases was Daubert applied. In fact, in only one instance was Daubert applied – the Autism Omnibus hearings. And as we all know, they failed.
So here we have a fairly desperate roll of the dice. Eschewing science completely, the autism/anti-vaxxers have decided to turn their attention to the law. By muddying the legal waters, they are attempting to make it appear as if autism by any other name has been compensated in at least 19% of the cases they looked at.
The truth is, it hasn’t. The truth is that in no cases I can see has a case been established scientifically to show vaccines cause autism.
LBRB needs you!
9 MayAs some have noticed, LeftBrain/RightBrain has been having issues. One of the main things is the fact that as LB/RB has become more and more popular over the years, it is not able to co-exist with normal Shared Hosting and is being CPU Throttled, something that basically means that, during peak time of popularity our hosts are having to basically turn the website off for 30min stretches to allow the CPU to cool down a bit.
The only way we can get around this practise is to get our own Dedicated Server. Having this means that we would have one CPU all to ourselves and thus not be throttled.
However, Dedicated Servers are not cheap. I have managed to source one for about £900 per year but that is way, way, waaaay beyond my personal means and much more than the advertising brings in.
So I’m asking for help. You should be able to see a ChipIn widget top right of each page. I’ve set the amount to $2000 and the time limit to a month but these are fairly arbitrary things. I’ll take whatever I can get and if it takes 6 months, so be it. I will of course be throwing in the advertising money that LBRB does get and I’ll also be putting in some personal money too but if you have a spare tenner, fiver or just a quid floating around in your PayPal acct, then I’d thank you for it.
Thanks in advance.
Prevalence of Autism Spectrum Disorders in a Total Population Sample
9 MayA long-awaited study of autism prevalence in Korea came out today in the American Journal of Psychiatry. Most of the information we have about autism prevalence comes from the US, the UK and Europe, so many were looking at this as the “Korean Study”. It is that, and very much more.
The title of the study is Prevalence of Autism Spectrum Disorders in a Total Population Sample. I expect the study will be gathering quite a lot of press as the results are quite remarkable. For one thing, the autism prevalence is estimated at 2.64%. That’s right, over double the current estimates in the United States and the U.K.. For another thing, most of the prevalence is for autistic students who were previously unidentified and unsupported.
Unfortunately, I was unable to obtain permission to review the article pre-embargo for discussion here on the Left Brain/Right Brain blog. Instead, I wrote about this for the Autism Science Foundation as Prevalence of Autism Spectrum Disorders in a Total Population Sample. There you will find a more thorough review of the paper, complete with questions and answers with team member Roy Richard Grinker of George Washington University. The study was led by Dr. Young Shin Kim of Yale, and includes an international team:
Young Shin Kim, M.D., Ph.D., Bennett L. Leventhal, M.D., Yun-Joo Koh, Ph.D. , Eric Fombonne, M.D. Eugene Laska, Ph.D., Eun-Chung Lim, M.A., Keun-Ah Cheon, M.D., Ph.D. ,Soo-Jeong Kim, M.D., Young-Key Kim, M.D., HyunKyung Lee, M.A., Dong-Ho Song, M.D., Roy Richard Grinker, Ph.D.
Again, the full post can be found at the Autism Science Foundation blog.
Matthew Isreal to retire from the Judge Rotenberg Center
6 MayBelow is the first paragraph of the announcement on the Judge Rotenberg Center:
Canton, MA (May 2, 2011) – Forty years ago, Dr. Matthew Israel founded the Judge Rotenberg Educational Center (JRC). Today, he announced his retirement as Executive Director of JRC, effective June 1, 2011.
The JRC and Matthew Israel are well known for use of and the high level of aversives used, as well as problems that have arisen from what even they admit is a misuse of these techniques:
The Judge Rotenberg Center (JRC) in Canton is believed to be the only facility in the country that uses often painful electric shock therapy on disabled children in order to alter behavior. In 2007, the State launched a criminal investigation into an incident where a prank phone call to the school led to the repeated electric shocking of two individuals in the dead of night. One of them, a child, was shocked 29 times, the other was shocked 77 times – sometimes while restrained, causing burns so severe they needed to be treated at a hospital. That investigation is apparently ongoing. In October 2009, the JRC made headlines again when Director Matthew Israel was fined by the Massachusetts Division of Professional Licensure for allowing 14 unlicensed employees at the school to use the title “psychologist.”
A permanent replacement For Mr. Israel has not been named.
Dr. Israel, 77, informed the JRC Board of Directors last week that he will step down on June 1, 2011 and move to California where he will join his wife Judy. The JRC Board of Directors voted to accept his resignation, with regret, and then voted to appoint longtime Assistant Executive Director Glenda Crookes as the Interim Executive Director. The Board also authorized a national search process to identify a permanent successor to Dr. Israel.
Given the glowing press release they have for his departure, I don’t expect the JRC to change it’s methods under a new director. I also expect they will continue to work hard to keep any outside observers from coming in and evaluating the program.
Ageing in autism
6 MayA new paper highlights the issue with geriatric populations in autism.
At present, one of the major challenges is that the majority of the currently older individuals with ASD has not received a formal diagnosis of ASD, and this would be dif?cult to establish using the currently recommended diagnostic assessments, because for many of them, neurodevelopmental history would be hard to obtain. The diagnosis of ASD in children involves both the parents and the child contributing…
You see, nobody working the field of geriatric psychology has any doubt that there is a large population of autistic people within the geriatric population:
Many adult and older subjects with ASD remain undiagnosed and thus are largely unknown to specialist services. [M]any have survived childhood and adulthood by either being fully supported by their family or holding jobs in
protected environment, enabling them to function ‘normally’, and thus escaping the ASD diagnosis. In support for this are the three recent case reports on diagnosing older people with ASD indicating that the standard clinical screenings used in childhood had to be modi?ed and adapted for ?rst?time diagnosis of ASD in older individuals.
As also published recently, it is becoming clearer that there is in fact, no ‘autism epidemic’ and that, in point of fact, research shows:
…nearly one percent of Britons older than 16 years have autism, a rate that is similar to that seen in children. Younger people were no more likely to be affected than older ones, however, which would have been expected if the condition were truly on the increase.
So what can we take from this? Being who I am and having the interests I have I take two main things:
1) Vaccines haven’t caused an epidemic of autism because an epidemic of autism does not in fact exist.
2) There is a large amount of undiagnosed adults with autism who need our help now. They are in community homes (group homes I believe they are referred to as in the US) or living with very elderly relatives. The majority are in situations where their autism is not recognised and not diagnosed. How do we help them?
The University of Newcastle held a Workshop Meeting ‘to reach a consensus on he need for new initiatives in this area.’ and came away with the following points:
1 Prevalence rates of older people with ASD (a prerequisite for planning service needs and placements)
2 Determine life expectancy, behavioural changes and cognitive changes with ageing in ASD
3 Data regarding health problems common in ASD, clinical assessments and treatment of seriously medically ill and frail older individuals with ASD
4 Information whether and how the characteristic clinical symptomatology of ASD change with age
5 Problems diagnosing older individuals with ASD not known to services and development of diagnostic tools for this purpose
6 Diagnosing cognitive impairment and dealing with challenging behaviour in nursing homes
7 Increasing need for advocacy and mental capacity assessments
8 Need to identify services, support and resources for older people with ASD
9 Design of adequate environment for older individuals with ASD
10 Neuroimaging studies in older individuals with ASD
11 Biobanking facilities (cerebrospinal fluid, blood/blood derivates and brain donations) and facilitating research
We should all be aware of the needs of elderly autistic people and try and find a way to help I think. How we should do this is vital. The first step must be the recognition that the idea of an autism epidemic marginalises them.
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