Hi folks,
Thanks to your extreme kindness, LBRB has been able to move to a much better hosting environment 🙂
However, as we’re moving _right now_ you’re going to see some oddness. Posts are going to disappear as will some comments. Hopefully we’ll be able to reinstate them ASAP but please bear with me whilst I get it all ship shape and bristol fashion.
In my town, in my county. The same county that has David Cameron amongst its MP’s.
I have written in the past that I will be attending IMFAR, the International Meeting For Autism Research. I will be supported by a stakeholder travel grant from the Autism Science Foundation, for which I am very grateful. What I haven’t mentioned before is that I was planning to attend IMFAR even before applying for the stakeholder grant. I’ve been planning on attending since I submitted an abstract: Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.
For those who have read this blog for some time, it will come as no surprise that I have a keen interest in autism research. In my writing I have often analyzed data from public datasets like the California Department of Developmental Services data. A while back there was a lot of attention placed on the National Survey of Children’s Health. The big news was the announcement of an autism prevalence of about 1%, and a notion that these data pointed to a very high “recovery” rate from autism. I took a look at the recovery rate question. I also looked for a what other information we might gather from the survey, including debunking the idea that 80% of parents of autistic kids divorce.
One of the big news stories from last year’s IMFAR was the announcement that autism does not result in a high divorce rate. The team presenting at IMFAR were much more rigorous in their analysis than the report of raw data that I did. But I have to say that when I read the IMFAR abstract I thought, good to see that team make this fact known. I also thought to myself: I’m asking the right questions of the data I am analyzing.
I also know how to give a presentation at a conference, having done so many times in the past. But conferences don’t let people present using a pseudonym. This was somewhat frustrating, as I have been looking at data from the National Household Education Surveys Program (NHES) and found some very interesting results. Once people took it upon themselves to out me, that was no longer an obstacle, so I submitted an abstract for IMFAR 2011:
Parent Reported Status and Expectations for Their Autistic Student Children: An Analysis of the 2007 National Household Education Survey.
M. J. Carey
Background: National surveys provide a good source of information on autistic populations within the United States. The 2007 National Survey for Child Health was used to estimate autism prevalence (Kogan 2009), as well as to make comparisons of such family factors as the divorce rate (Freedman 2010). A similar survey, the National Household Education Surveys Program (NHES), is an opportunity to explore comparisons between parent-reported factors involving the lives and education of autistic and non-autistic students.Objectives:
1. Compare educational placements and perceived educational abilities between children with (a) parent-reported autism spectrum disorders (ASD) and (b) children in the general population.
2. Explore parent expectations for the future of their ASD student.Methods: Data used for this study were taken from the National Household Education Surveys Program (NHES 2007). NHES had 10,682 total respondents, representing students ages 3 to 20 years. 127 parents identified their child as having autism and an additional 37 identified their child as having pervasive developmental disorder. Parent responses for this group (164 total, or about 1 in 65) were compared to those of the parent responses within the general survey population.
Results: 75% of students with parent-reported ASD have an Individualized Education Plan. Parents reported that their ASD students are more likely to have repeated a grade (23% ASD vs. 9% without) or be home schooled (5.5% vs. 2.9%) or be in a program that does not assign letter grades (37% vs. 22%). ASD students were reported as less likely to be in private school (9.6% vs. 13.4%) and to have moved in order to attend a specific school (17.7% vs. 21.6%). Parents are generally satisfied with their child’s school (82.2% rated somewhat or very satisfied), but less so than for non-autistic students (90.7%). Of those children who receive letter grades, the number of ASD students getting “mostly A’s” or “mostly B’s” is high (79.6%), but less than the general population (84.1%). Parents of students in middle school or above were asked about their future expectations. The fraction of ASD students whose parents’ expectation were that their child would receive less than a high school diploma is much higher than for the general population (6.3% vs. 0.6%). However, by far the majority of parents expect their autistic student to receive a high school diploma, with most expecting at least some vocational school or college to follow. Most parents in the general population expect that their child would achieve a 4-year or graduate degree (72.7%). While the parental expectations for ASD students to obtain a bachelor or higher degree is much lower (28%), this is still a notable fraction of the autistic population.
Conclusions: Parents report that their ASD students lag behind the general student population in academic performance. Parent report high satisfaction with their schools, but at a lower level than the general population. Many parents of ASD students report high expectations for their ASD students. Services research should consider how to support individuals with ASD with a broad spectrum of abilities and expectations.
The crude administrative prevalence is quite high at 1 in 65 (1.5%). Notably higher than the 1% value in the last CDC prevalence estimate and the estimate from the NSCH from the same year. As you can see, this is not where I placed the emphasis in this abstract.
What struck me when I looked at these data was the evidence for how broad the spectrum is. Most students are on an IEP. Students with parent-reported autism are in non-graded environments more, and are not getting as high grades. But, there are also a large fraction whose grades are high and there is a small, but notable, group whose parents have expectations of college and beyond.
One major question is how realistic are these parent expectations? How well do these students really do on transition out of school? Another presentation at IMFAR looks into that. This is by Prof. Shattuck’s group at Washington University at St. Louis. To be very clear, I had nothing to do with this study and didn’t even know it was in the works. Prof. Shattuck’s work is far more rigorous than the abstract I submitted, but I’m encouraged to be asking good questions at least. Here is his abstract:
110.096 75 The Role of Parental Expectations In Predicting Post-High School Outcomes for Youth with ASD. J. L. Taylor*1 and P. Shattuck2, (1)Vanderbilt Kennedy Center, (2)Washington University
Background: There is considerable variability in post-high school outcomes of young adults with ASD. Underemployment is common, and many young adults continuing living with their parents or in supported settings after leaving high school. Research examining predictors of independence among adults with ASD has focused on characteristics of the adult that are difficult to change, such as early language or IQ. The present study focused on one malleable factor that is related to adult outcomes in typically developing individuals: parental expectations.
Objectives: This study had two objectives: 1) to describe parents’ expectations for the post-high school educational, occupational, and residential outcomes of their son or daughter with ASD; and 2) to determine the correspondence between parental expectations and outcomes.
Methods: This study used data from waves 1 and 4 of the National Longitudinal Transition Study 2 (NLTS2), a nationally representative, 10-year longitudinal survey of adolescents in special education. Participants for this study included 390 parents whose son or daughter had received a diagnosis of ASD through the school system and had exited high school by wave 4.
Parental expectations were assessed at wave 1, while youth were still in high school, with the following questions: “How likely do you think it is that (youth) will:” 1.) “graduate from a 4-year college;” 2.) “eventually will get a paid job;” 3.) “eventually live away from home on (his/her) own without supervision.” The son or daughter’s educational activities, current living arrangement, and work status were measured at wave 4. Severity of impairment (conversational ability, social communication, mental skills) was statistically controlled in all analyses.Results: One-quarter (27%) of parents expected that their son or daughter would graduate from a 4-year college, 88% expected that their son or daughter would work for pay, and one-half expected that he or she would live outside the home without supports. Family income was not independently related to parents’ expectations that their son or daughter would attain a 4-year degree or live outside of the home without supports. Families with higher incomes were more likely to expect that their son or daughter would work for pay, B=.08, p.10. Parental expectations did, however, predict the likelihood that youth would be working for pay, OR=6.05, p<.01.
Conclusions: For many parents of youth with ASD, expectations for their son or daughter’s post-high school living arrangements and education may not be realized. Expectations for paid employment, however, may increase the likelihood of post-high school employment.
Again, for emphasis: “Only 39% of youth whose parents said they “definitely would” graduate from a 4-year college were currently enrolled or had graduated; 45% of youth whose parents said the “definitely would” live away from home independently were currently doing so”.
The question is: how can we achieve the goal where more autistics make the transition from school to adulthood and employment or college? I don’t expect all to make that transition, but I feel strongly that we can do a lot better as a society than we are now.
note–I originally posted this last month when the Abstracts for IMFAR 2011 were first put online. Unfortunately, they were online by mistake. There was an embargo still in place. I pull the article then and am re posting it now that the embargo is lifted. Friday at 9am, I will be standing in front of the poster.
Alex Plank is at IMFAR with a video team and they taped the press conference. Mr. Plank runs the Wrong Planet website (where you can see this and many other great videos).
The press conference was just over 1 hour. You can skip around to find parts that may interest you.
Here is a rundown of the press conference, and the slides:
Introduction 1: Dana Marnane of Autism Speaks
Introduction 2: David Amaral of U.C. Davis
Panelist 1: Antonio Hardan of Stanford slides
Panelist 2: Irva Hertz-Picciotto of U.C. Davis (slides)
Panelist 3: David Mandell of U. Penn slides and more slides
Panelist 4: Eric Courchesne of U.C. San Diego. (slides)
The International Meeting For Autism Research will be held in May. Abstracts for the conference are public now. One search that will be common amongst the online parent community is to see what research has been done on the question of vaccine causation.
Here is an abstract looking directly at the question. They compared siblings of autistics, children at risk for developmental delays and children expected to develop typically. They found–no evidence of increased risk from vaccination:
A. Margolis1, J. D. Jones2, A. Trubanova2, W. Jones2, K. Chawarska3 and A. Klin2, (1)Yale Child Study Center, Yale University School of Medicine, New Haven, CT, (2)Marcus Autism Center, Children’s Healthcare of Atlanta & Emory School of Medicine, Atlanta, GA, (3)Child Study Center, Yale University School of Medicine, New Haven, CT
Background: Recent increases in the number of recommended childhood vaccines have raised public concerns about the potential side effects of immunizations on children’s health. Because of the increasing prevalence of autism diagnoses over the last 15 years, this disorder, in particular, has become the focus of much of the attention and concern surrounding childhood vaccines. As a consequence of this debate, the use of childhood vaccines, especially the measles-mumps-rubella vaccine (MMR), has decreased significantly, and this decrease has led to numerous outbreaks in diseases previously prevented by vaccines. Furthermore, research addressing the relationship between vaccines and autism has relied primarily on retrospective population studies, with little power to determine the role of immunizations in individual outcomes.Objectives: The primary goal of this study is to examine the relationship between the frequency and number of childhood immunizations and the subsequent likelihood of developing autism. In addition, this study aims to investigate the relationship between childhood vaccines and disorder severity in children who do go on to develop autism.
Methods: Immunization data were collected for 91 children divided among the following three groups: (1) siblings of children with an autism spectrum disorder diagnosis, (N =48; gender = 37M); (2) children at risk for developmental delays (N = 7; gender = 5M); and (3) children expected to develop typically (N = 36; gender = 19M). All children were at least 2 years of age when their immunization records were collected. Individual immunization data were recorded and then compared with diagnostic outcome and behavioral data.
Results: Tests of association and linear multiple regressions revealed that neither a greater number of childhood vaccines nor a higher rate of vaccination had a positive relationship with subsequent autism spectrum diagnosis (N=8; gender=7M) or disorder severity, which was assessed in all participants. In addition, comparison of immunization data to behavioral indicators at 2 years of age did not reveal any relationship between either higher frequency or greater number of childhood vaccines and subsequent negative behavioral outcomes. Likewise, neither vaccination with MMR nor the age of MMR vaccination was significantly related to outcome. Instead, because siblings of children with autism were less likely to be vaccinated according to the recommended schedule, both correlations and multiple regressions revealed a significant relationship between higher rates of vaccination and non-ASD behavioral outcomes.
Conclusions: These results suggest that childhood vaccines do not increase children’s risk of developing autism and do not exacerbate the disorder severity in children who are later diagnosed with autism. Children who receive a greater number of vaccines overall, who receive the MMR vaccine, or who receive immunizations at a higher rate, do not differ significantly on subsequent behavioral measures from children who receive vaccines on an alternative schedule or children who do not receive vaccines. Instead, the results of this study emphasize heritability in risk for autism, and also indicate that siblings of children with an autism diagnosis are less likely to be vaccinated, which actually increases their risk for contracting other illnesses.
Here’s an observation that has often been predicted: ” Instead, because siblings of children with autism were less likely to be vaccinated according to the recommended schedule, both correlations and multiple regressions revealed a significant relationship between higher rates of vaccination and non-ASD behavioral outcomes.” I believe this very point has been predicted by blogger Prometheus a number of times.
The study is relatively small in my opinion. With 91 participants, the number of autistics is likely small. Also, this will focus on familial autism. There may very well be a difference between the types of autism which run in families and that which is more sporadic.
Note–I originally posted this in April when the abstracts were first put online. They were online in error, as there was an embargo in place. The post was taken down at that time and I’ve now made it live again since the embargo is lifted.
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.
According 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.
The 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.
The 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.
Lisa 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.
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