Archive | June, 2011

Speech impairment and autism, inseparable?

11 Jun

In a recent paper purporting to link autism and vaccines, the author, Gayle DeLong, chose to lump autism and speech or language impairments together to create an autism “prevalence” from special education data:

To determine autism prevalence by U.S. state, the number of 8-year old students classified with either (1) autism or (2) speech or language impairments (speech disorders) was divided by the total number of 8-year-olds in the state.

The author has defended the choice over at the Respectful Insolence blog:

Orac,
I won’t respond to the personal attacks, but I will correct one error. The Herbert reference in the paper is incorrect. The correct citation is: Herbert and Kenet (2007) Brain abnormalities in language disorders and in autism. Pediatr. Clin. North Am. 54:563-583 (abstract: http://www.ncbi.nlm.nih.gov/pubmed/17543910). The paper shows that brain injury of people with autism is similar to brain injury of people with speech and language disorders. Another paper that makes much the same point is Herbert et al. (2002) Abnormal asymmetry in language association cortex in autism. Ann. Neurol. 52:588-596 (abstract: http://www.ncbi.nlm.nih.gov/pubmed/12402256).

Speech impairment is such a fundamental symptom of autism that the two conditions cannot be separated, especially when the child has a speech/language impairment that is strong enough to be classified as a learning disability.

First, kudos to Ms. DeLong for taking her statement to Orac’s blog. The participants are clearly not supportive of her statements–such as:

“Speech impairment is such a fundamental symptom of autism that the two conditions cannot be separated, especially when the child has a speech/language impairment that is strong enough to be classified as a learning disability.”

All I can say is that I disagree. Strongly.

Here is the definition that California uses for Autism as a special education category:

56846.2. (a) For purposes of this chapter, a “pupil with autism” is a pupil who exhibits autistic-like behaviors, including, but not
limited to, any of the following behaviors, or any combination thereof:
(1) An inability to use oral language for appropriate communication.
(2) A history of extreme withdrawal or of relating to people inappropriately, and continued impairment in social interaction from
infancy through early childhood.
(3) An obsession to maintain sameness.
(4) Extreme preoccupation with objects, inappropriate use of objects, or both.
(5) Extreme resistance to controls.
(6) A display of peculiar motoric mannerisms and motility patterns.
(7) Self-stimulating, ritualistic behavior.
(b) The definition of “pupil with autism” in subdivision (a) shall not apply for purposes of the determination of eligibility for
services pursuant to the Lanterman Developmental Disabilities Services Act (Division 4.5 (commencing with Section 4500) of the
Welfare and Institutions Code).

One can not say that SLI and autism are directly linked.

The data don’t support it either. Her own paper gives administrative prevalence numbers for autism+SLI which are as high as 10%, about a factor of 4-10 than reported for autism.

Also, consider this: if you look at the administrative prevalence of SLI with age in a given year, it is sharply peaked at around age 6 or seven. Here are the data for SLI and autism from the most recent year data are available in California. (click to enlarge)

(note–when this was first published, the graph was not in color).

No, that isn’t a “tidal wave” of SLI. This is what SLI looks like every year. It is a category mostly for younger children. I’ve often wondered if many of these children end up in the specific learning disability category in later years as this category is largely made up of older kids. Either way, it is clear that children tend to leave the SLI category, and they certainly aren’t being reclassified as autistic. Clearly, SLI is not something which can not be separated from autism.

I don’t know why Ms. DeLong chose to lump autism and SLI together for her study. I do feel quite strongly that the idea that they are basically the same is incorrect.

Vulnerable parents

10 Jun

I read this phrase often on the web: vulnerable parents. Usually in some discussion of families involved in alternative medicine or vaccine causation. It’s a phrase that bothers me.

I have to say that I find the phrase very odd. Odd as in it is redundant. To be a parent by definition is to be vulnerable. Every time we make connections to others, be they children, spouses, friends, heck even pets, we make ourselves vulnerable. Of course we feel pain when a loved one suffers or is in pain.

If you’ve ever spent the night in the ER with a kid with a broken arm, you know what I mean. Worse in many ways is to be the one at home while your kid is in the hospital, waiting for messages.

We are all vulnerable. Parent or no. Need I say it: autistic or no.

Vulnerable parent. That phrase has no meaning for me.

It is how we deal with our vulnerabilities that defines us. And I believe that’s what people really mean when they say “vulnerable parents”: parents who make choices they probably wouldn’t if they weren’t influenced by their love of their children.

There’s a whole spectrum of ways people respond to their vulnerability. And, yes, for some parents of autistic kids that involves being susceptible to some very questionable and poorly supported ideas. But it’s too simplistic to attribute this to “vulnerable” parents. We all are vulnerable.

Autism and vaccines, 911 truths and fluoridation

9 Jun

Yes, I’m ramping down on discussing Andrew Wakefield. Let this stand as an example why. He’s joined in with 911 truthers and anti-fluoridation advocates in a series of talks in Ireland. The talk is billed as “The Master Plan” and “The Hidden Agenda for Global Scientific Dictatorship”.

If Andrew Wakefield feels like he has any credibility left, why is he lending it to these groups?

For more information, check Seth Mnookin’s post. He’s pulled in some of the 911 truthers who want to discuss their points. I see parallels between the truthers on the net and the vaccine “skeptics” in how they respond.

Teaching students with developmental disabilities to operate an iPod Touch(®) to listen to music.

9 Jun

Here is a really, really small study. But the idea to me is very cool. Using the iPod touch (the little brother to the much discussed iPad) to teach children with developmental disabilities to listen to music. The authors worked with only three children (really small), and used video modelling to show kids how to use the iPod touch.

The idea of a simplified, visual operating system like that on the iPod and the iPad is an amazing step forward. A simple task like choosing one’s own music can be a big step forward in independence, if you ask me.

Teaching students with developmental disabilities to operate an iPod Touch(®) to listen to music.
Kagohara DM, Sigafoos J, Achmadi D, van der Meer L, O’Reilly MF, Lancioni GE.
Source

Victoria University of Wellington, Wellington, New Zealand.
Abstract

We evaluated an intervention procedure for teaching three students with developmental disabilities to independently operate a portable multimedia device (i.e., an iPod Touch(®)) to listen to music. The intervention procedure included the use of video modeling, which was presented on the same iPod Touch(®) that the students were taught to operate to listen to music. Four phases (i.e., baseline, intervention, fading, and follow-up) were arranged in accordance with a delayed multiple-probe across participants design. During baseline, the students performed from 25 to 62.5% of the task analyzed steps correctly. With intervention, all three students correctly performed 80-100% of the steps and maintained this level of performance when video modeling was removed and during follow-up. The findings suggest that the video modeling procedure was effective for teaching the students to independently operate a portable multimedia device to access age-appropriate leisure content.

Here is a paper I found looking for the link to the above study
Three Students with Developmental Disabilities Learn to Operate an iPod to Access Age-Appropriate Entertainment Videos

Again, small. I haven’t looked through to see how good the study is. I’m just glad to see this technology being investigated like this at this point.

A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population

8 Jun

A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population is the latest in a long series of studies purporting to show a link between vaccines and the rise in autism prevalence. Like many of these studies, this one has major flaws. There was a time when I would take the effort to go through such studies in detail. There is enough bad in this one to take so long that I just can’t see taking the effort.

They claim that for every 1% increase in vaccination (defined in a very strange way, as you will see) their study shows that the autism rate (defined in an even stranger way) rises 1.7%.

Look at the title again: A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population

But, strangely enough, the author doesn’t study autism prevalence. Seriously. The author studies “To determine autism prevalence by U.S. state, the number of 8-year old students classified with either (1) autism or (2) speech or language impairments (speech disorders) was divided by the total number of 8-year-olds in the state.”. Yep, the author lumps autism with SLI. Consider, say, California in 2002 (one of the study years). There were 1,664 8-year-old students receiving services under the disability category “autism”. On the other hand, there were 22,702 8-year-old students in the SLI category. The autism data are basically swamped by the SLI data. Begs the question: what did the analysis show for autism alone? Could it have shown a protective effect of vaccination. Don’t get me wrong, the study isn’t strong enough to show a real association one way or another, but you really got to ask yourself why the author chose to bury autism this way.

In case you are wondering, the autism+SLI “prevalence” for California was about 5% for 8 year olds/3rd graders in 2001 (using 488.633 3rd graders)

Here is the abstract:

The reason for the rapid rise of autism in the United States that began in the 1990s is a mystery. Although individuals probably have a genetic predisposition to develop autism, researchers suspect that one or more environmental triggers are also needed. One of those triggers might be the battery of vaccinations that young children receive. Using regression analysis and controlling for family income and ethnicity, the relationship between the proportion of children who received the recommended vaccines by age 2 years and the prevalence of autism (AUT) or speech or language impairment (SLI) in each U.S. state from 2001 and 2007 was determined. A positive and statistically significant relationship was found: The higher the proportion of children receiving recommended vaccinations, the higher was the prevalence of AUT or SLI. A 1% increase in vaccination was associated with an additional 680 children having AUT or SLI. Neither parental behavior nor access to care affected the results, since vaccination proportions were not significantly related (statistically) to any other disability or to the number of pediatricians in a U.S. state. The results suggest that although mercury has been removed from many vaccines, other culprits may link vaccines to autism. Further study into the relationship between vaccines and autism is warranted.

Here are a few more important points from the paper:

1) They use the “prevalence” of autism or SLI from special education numbers. These data are just not reliable for this sort of work. This has been gone over and over. The best discussion of this is from Jim Laidler in 2005. US Department of Education Data on “Autism” Are Not Reliable for Tracking Autism Prevalence

2) Note that they use cohorts from the mid 1990’s, soon after autism was first added as a special education category. They are pretty much guaranteed that the “prevalence” they calculate will go up.

All they need is to link this to changes in the vaccine uptake. Easily done. The vaccine uptake rate is changing dramatically during the first couple years of the study. For example, Alabama goes from 46 to 76% in two years. Why is that? That brings us to point (3):

3) Here’s a trick bit: the author uses the vaccine schedule from 1995. A brand new vaccine schedule was rolled out and states and pediatricians picked it up over the next couple of years. Of course the vaccine uptake, by this measure, was low at the start.

Yes, they chose a very artificial measure of “vaccine rate” to insure that they had big changes in the “rate” during the study period.

How often do we hear SafeMinds (the author is a member by the way) ask “where’s the study of the vaccinated vs. unvaccinated?” Even when they have the data, they don’t do the comparison. They compare children who got the full 1995 schedule of vaccines vs. children who didn’t (missing one or more vaccines). My guess is there isn’t enough non-vaccinated data to make the study. But, that doesn’t explain why they went ahead with this really bad study.

How about a “too many too soon” study, comparing the total number of vaccines vs. autism rate? Again, not done in this study.

Of course the author is aware of the vaccinated/unvaccinated question. A few quotes from the paper:

A child who missed only one shot was different from a child who was completely unvaccinated, yet in this study both children were classified as not fully vaccinated.

and

A child who received all but 1 vaccination on time might be different from a child who received no vaccinations, yet both were in the group of children who did not receive timely vaccinations. Had the researchers examined fully vaccinated versus completely unvaccinated children, the results might have been different.

and

A follow-up study could investigate the prevalence of autism among unvaccinated children. Other children who typically are not vaccinated could be surveyed. These groups include the Amish and children served by Homefirst, a health clinic near Chicago (Eisenstein, 2009), as well as some homeschooled children or younger siblings of children with autism whose parents decided not to vaccinate.

“Eisenstien, 2009” is a link to the HomeFirst website, which includes unsupported claims. What is the point of a citation to an unsupported claim? For example, in the cited link, Dr. Eisenstein makes the unsupported claim:

“Since 1973, The Homefirst physicians have been offering vaccine choice and awareness Unlike most doctors, the Physicians of Homefirst are honored to serve your family if you give all some or none of the vaccines.

They have virtually no asthma, allergies, ADHD, ADD or Autism in their more then 35,000 un-vaccinated children. “

Where’s the data on how many of their patients have ADD, autism, or the other conditions? Also, I’ve seen the quoted number of “unvaccinated” at Homefirst vary through a very large range.

But back to the actual paper. What does the study claim as a result?

The results suggest that if a given U.S. state has a 1% higher vaccination rate than another U.S. state, then the state with the higher vaccination rate might have, on average, a 1.7% higher prevalence of autism or speech disorders.

Remember, this is using the strange definition of “vaccination rate” is how many children got the full series vs. how many missed any one or more vaccines.

Here you can see their data. Yes, “vaccination rates” and “autism or SLI rates” both go up with time. But it is how they go up that show us how bad this study is:

Take a close look at the vaccination rates for the first two years. That’s when there are the big increases. This is expected because, again, they measuring vaccination rates as the percentage of kids who got the full 1995 schedule, and they start in 1995 when the schedule was just introduced.

The autism/SLI rate, on the other hand, shows a slower, more steady increase (ignoring the noise).

Take a look at table 1. again. Take a look at the first couple of years in, for example, Alabama. The vaccination rate they quote increased from 46% (1995) to 65% (1996), rising again the next year to 76.5% (1997). What did the autism+SLI rate do? It went down.

Recall the result:

Further, if a given U.S. state decreases its vaccination coverage by 1% from one year to the next, prevalence of autism or speech disorders may, on average, fall by 1.7%. If 100% children received this series of vaccinations, the prevalence of autism or speech disorders would be 1.7%

Since the “vaccination rate” went up 20 points (from 46% to 65%), we would expect autism/SLI to go up a lot too: 0.34%, from 4.6% to 4.92%. You can see the same sort of trends in the first two years state by state–big increases in the vaccination rates, small or negative changes in the autism/SLI rates.

It’s only after many years go by that there are notable changes in the autism/SLI rates. Even then it isn’t consistent. Again, look at Alabama. Over the entire study period, the autism/SLI rate went down. Same for the next state on the list, Alaska.

The next state on the list (yes, it’s alphabetical) is one of the “winners” in the study. Autism/SLI rates went up notably over the study period, from 3.8 to 6.2%. But, strangely enough (if you believe the author that is) this didn’t happen for the cohorts which saw the big increases in vaccine rates. A big jump in autism/SLI rate is seen for the last year (a 0.8% jump), but this is for years when the change in vaccination rates was relatively modest.

To put it simply, the result of the study just doesn’t make sense given the data that we (and the referees who cleared this paper) can plainly see. This is a prime example of exactly the sort of paper that really has shown over the years the sort of intellectual dishonesty which has promoted the vaccine-epidemic notion.

Combating Autism Reauthorization Act

3 Jun

House bill 2005 is now online. As you will see, it is a very brief bill, making modifications to the original Combating Autism Act.

A BILL

To reauthorize the Combating Autism Act of 2006.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `Combating Autism Reauthorization Act of 2011′.

SEC. 2. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH PROGRAM.

Part R of title III of the Public Health Service Act (42 U.S.C. 280i et seq.) is amended–

(1) in section 399AA(e), by striking `2011′ and inserting `2014′;

(2) in section 399BB(g), by striking `2011′ and inserting `2014′;

(3) in section 399CC(f), by striking `2011′ and inserting `2014′; and

(4) in section 399DD–

(A) in subsection (a), by striking `Not later than 4 years after the date of enactment of the Combating Autism Act of 2006′ and inserting `Not later than 2 years after the date of enactment of the Combating Autism Reauthorization Act of 2011′; and

(B) in subsection (b), in paragraphs (4) and (5), by striking `the 4-year period beginning on the date of enactment of this Act’ and inserting `the 6-year period beginning on the date of enactment of the Combating Autism Act of 2006′.

SEC. 3. AUTHORIZATION OF APPROPRIATIONS.

Section 399EE of the Public Health Service Act (42 U.S.C. 280i-4) is amended to read as follows:

`SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.

`(a) Developmental Disabilities Surveillance and Research Program- To carry out section 399AA, there is authorized to be appropriated $22,000,000 for each of fiscal years 2012 through 2014.

`(b) Autism Education, Early Detection, and Intervention- To carry out section 399BB, there is authorized to be appropriated $48,000,000 for each of fiscal years 2011 through 2014.

`(c) Interagency Autism Coordinating Committee; Certain Other Programs- To carry out sections 399CC, 404H, and 409C, there is authorized to be appropriated $161,000,000 for each of fiscal years 2011 through 2014.’.

END

Panorama captures torture and abuse in UK care homes

1 Jun

I try and watch programmes about special needs issues if I can. It helps to stay abreast of the latest issues in the wider special needs community.

However, last nights Panorma I had already decided I simply couldn’t watch.

In one scene in the programme, a male support worker seems to goad a female patient to throw herself out of a second-floor window. He says: “Go on, do it now I’m here. I’d love to see you try it: you will go flying. … When you hit the floor, do you reckon you will make a thud or a splat?”

In another scene, a second male support worker is seen to act as a Nazi camp commandant, repeatedly slapping a patient across the face with a pair of leather gloves and saying: “Nein, nein, nein!”

Staff, sometimes with qualified nurses watching, used forms of restraint that an expert described as closer to martial arts rather than any approved technique. A female patient is seen pinned beneath a chair for more than 30 minutes with one support worker sitting in the chair and keeping his foot on her wrist, while a second worker kneels on her legs.

Source.

The patients in this case are mentally ill people, people with learning difficulties and people with autism.

What I did watch – for awhile – was the Twitter stream of people reacting to the programme but when it became clear that the programme was just as awful as I thought it might be I simply had to turn that off too.

Maybe you’re stronger than me. If so, theres an example of the sort of thing Panorama captured here.

Whether you watch it or don’t, pass it on to others to watch. Maybe those who aren’t aware will realise that for those of us with friends and relatives with special needs, this issue is of paramount importance.

My IMFAR poster

1 Jun

I was fortunate enough to attend IMFAR this year on an Autism Science Foundation stakeholder travel grant. This is the second year of the program, and I hope that they continue it. Given that, I thought it would be valuable to write about my day-to-day experiences: Looking back at IMFAR from an ASF Stakeholder Travel Grant Awardee

I have to admit, my experiences were probably out of the ordinary for a stakeholder travel grantee. I hope that many or even most will be people who are not familiar with scientific conferences (I have attended several over the past 20 years). I do hope that more bloggers attend and report back, though, so experiences with the press conference could be of value.

One aspect of my IMFAR visit that I didn’t discuss in detail on the ASF blog was that of presenting a poster. My topic was:

Parent Reported Status and Expectations for Their Autistic Student Children:
An Analysis of the 2007 National Household Education Survey

Here’s the abstract:

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 percieved 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.

Here’s the actual poster:

Imfar poster 2

If you are unfamiliar with a poster presentation, here’s the short version: You take your study and write it up on a 3′ x 4′ piece of paper. You stand in front of the poster and discuss it with the people who are interested.

I was very lucky in that I was right by one of the doors, so a lot of traffic came my way. That traffic included a few people who knew me from my blogging here. One reader came up and said “Hi Sullivan!”. A group from Kennedy Krieger stopped by and told me they wanted to take a picture of the poster to show their colleague–who I was citing in my work. I don’t think they are used to people saying, “You guys from Kennedy Kreiger rock!”, but they got it from me. I spoke with a researcher I know who worked under Ami Klin (formerly of Yale, now at Emery), whom I got to meet there too.

I was scheduled for the 10am time slot on Friday. This means I had to duck out early from Eric Courchesne’s keynote talk. I spoke with him later and he asked me about his talk. I told him it was very good and he responded with the killer question: what did I think of the last 15 minutes? I had to admit that I was standing in front of my poster then and missed his conclusion. To which he responded (with a bit of a mischievous grin, if I may say): you missed the best part! as he disappeared through a door.

I was scheduled for 1 hour. Posters can be a bit tedious when you stand there waiting for someone to talk with. I was lucky in that I went pretty solid for 2 hours.

A poster presenter needs to have the 1 minute “walk through” of the study. Mine was basically this: A lot of work has been focused on the National Survey of Children’s Health (NSCH). This is the study which formed the basis of one of the “autism prevalence is 1%” last year. There didn’t seem to be much focus on the educational survey which I presented, and I was there to make it known that there was this other data source. I didn’t dwell too much on the prevalence (1 in 65) or the fact that the prevalence was basically flat with age (Figure 1). What I found interesting was the fact that there is a very wide range of parental reports of abilities, difficulties and expectations for their kids. Yes, by every measure shown, autistic students are more likely to be in ungraded classrooms, get lower grades, have reports of behavior problems and the like. But a notable fraction are being parent-reported as getting “A’s”. Most parents expect their children to graduate high school (over 90%) and many parents expect some college or even graduate school. Those last questions were only asked of parents of children in middle school and above, so they had some basis to make the predictions.

I pointed out that there is no way to see how realistic the parent’s expectations were (and that there was a far more rigorous study being presented at IMFAR on the transition out of school for autistic students–that of Paul Shattuck’s group in St. Louis–and that expectations exceed reality). The first person to look at my poster noted that 30% of parents of children overall (the general population) were expecting their kids to go to graduate school, which shows that all parents are proud of and optimistic about their children.

There was a wonderful presentation on the poster next to mine by a team from Georgia Tech. I hope to include that team’s work in a later post.

I am very grateful that IMFAR accepted my abstract. I went in with the idea that my poster might be the least interesting study presented. In the end, if I do say so myself, I held my own. Sure, it’s not earth shattering research. But there were interesting points. For me it was a great experience, even if it meant a flashback to my grad school days of standing in front of a poster.

Science asks XMRV authors to retract paper

1 Jun

XMRV (Xenotropic murine leukemia virus-related virus) has been “linked” to a number of conditions, from prostate cancer to autism. One of the most publicized is the purported link between XMRV and chronic fatigue syndrome (CFS). One of the major papers in this “link” was published in the journal Science. Well, Science has asked the authors to retract the paper.

Prometheus over at A Photon in the Darkness discusses this in detail in Science asks XMRV authors to retract paper. Of particular interest are the studies showing how XMRV can be falsely detected if there is contamination. Rather reminiscent of work on measles virus and autism of years gone past.

Newer Entries →