Teaching reading to special needs children: The Parental contribution

Teaching reading to children - Google Search: has 31,700,000 hits today.

This is number 31,700,001. This is the approach we have taken with one special child who has a range of learning and behavioral issues, including some pretty extreme ADHD. There's no data to show it's generalizable, but we'd follow this approach were we to start over again.

The underlying assumption is that, for the truly challenged reader [1], this is not a race. It is the Long March. Years and years and years of work to try to reach functional literacy. Months of slow progress, inexplicable leaps forward, intermittent regressions. The primary challenge is to make the Long March something a child will manage.

1. The main direct contribution of parents is to keep the home reading experience enjoyable and regular. This means whatever one is doing at home, it brings success. School, when he's at his best and he's with the experts he wants to please, is where new learning occurs. Home is where reading is modeled and encouraged. (This advices is inverted for learners who are cooperative at home and rebellious at school. We are fortunate to have a learner who is cooperative at school and "expressive" at home.) Reading rewards have varied over the past 5 years, from stickers to chocolate to snacks to, most recently, computer time.

2. The main indirect contribution of parents is to get the school to focus on reading to the exception of just about everything else except social skills and physical activity. Schools have a lot of mandates to meet, but our son's school has managed to focus most of his day on reading. He does some math too, which is "nice", but, really, we don't care about math, social studies, science, etc etc.

That's about it. In the past we've struggled to bias the schools towards an evidence-based approach to reading (structured phonics is where the evidence is best) with mixed success. I think they'll get there one day, but behavioral change is very hard anywhere. In our son's case reading is so difficult I'm not sure now that any one approach would be uniquely better. Maybe his teacher's motley mix of techniques has been right for him.

[1] This is in contrast to another child we have with a different set of diagnoses. He did very well with a painful Kindergarten "speech and language" program, struggled until the middle of 2nd grade, then started reading adult books. A different set of problems and a much smaller challenge.

PodCorps: bring lectures on special needs children to those who cannot attend

Every few months we hear of an interesting presentation on special needs children at some Twin Cities locale, but part of being a "major league" parent is that you evenings are for working. Just like mornings, nights, etc. We rarely get to these presentations.

What we need are podcasts of the presentations, ideally with download of presentation materials as PDF handouts. Podcasts, though, are tricky to make. Why is why Jon Udell's post on PodCorps is interesting:

Doug Kaye's PodCorps launches today � Jon Udell

... Every day there are events somewhere that might usefully be audio-recorded and published on the Internet: lectures, meetings, political rallies. In many cases the participants would be happy to have their spoken words recorded and published, but wouldn’t have a clue about the mechanics of digital audio recording and Internet publishing.

Doug’s idea is to create a corps of volunteer stringers who can show up at these events with their digital recorders, process the digital audio, and then publish it — typically at the Internet Archive.

To ask a PodCorps volunteer to show up at an event, the event producer posts the event on Eventful.com with the tag podcorps. This is a lovely example of a technique that Esther Dyson calls visible demand. It’s also an illustration of another key idea: that most people will achieve lightweight service integration by simply using agreed-upon tags. I explore this idea at my own experimental community information site, elmcity.info, which hosts nothing directly but instead gathers tagged items from elsewhere...

I think these public spirited folk might be willing to help us out. I don't know if we have any volunteers in the Twin Cities, but we're a pretty geeky town ...

The safety and efficacy of Ritalin

Another article reiterating the peculiar longterm efficacy and safety of Ritalin (methylphenidate). The side-effect data is based on chart review, so it's particularly meaningful (22%). The primary value of the study is to show that ritalin works as well in the real world as in clinical trials.

J Dev Behav Pediatr. 2006 Feb;27(1):1-10.
Long-term stimulant medication treatment of attention-deficit/hyperactivity disorder: results from a population-based study

* Barbaresi WJ, et al

Department of Pediatric and Adolescent Medicine, Division of Developmental and Behavioral Pediatrics, Mayo Clinic College of Medicine, Rochester, MN 55905, USA. barbaresi.william@mayo.edu

The purpose of this study was to offer detailed information about stimulant medication treatment provided throughout childhood to 379 children with research-identified attention-deficit hyperactivity disorder (ADHD) in the 1976-1982 Rochester, MN, birth cohort. Subjects were retrospectively followed from birth until a mean of 17.2 years of age. The complete medical record of each subject was reviewed. The history and results of each episode of stimulant treatment were compared by gender, DSM-IV subtype of ADHD, and type of stimulant medication. Overall, 77.8% of subjects were treated with stimulants. Boys were 1.8 times more likely than girls to be treated. The median age at initiation (9.8 years), median duration of treatment (33.8 months), and likelihood of developing at least one side effect (22.3%) were not significantly different by gender. Overall, 73.1% of episodes of stimulant treatment were associated with a favorable response. The likelihood of a favorable response was comparable for boys and girls. Treatment was initiated earlier for children with either ADHD combined type or ADHD hyperactive-impulsive type than for children with ADHD predominantly inattentive type and duration of treatment was longer for ADHD combined type. There was no association between DSM-IV subtype and likelihood of a favorable response or of side effects. Dextroamphetamine and methylphenidate were equally likely to be associated with a favorable response, but dextroamphetamine was more likely to be associated with side effects. These results demonstrate that the effectiveness of stimulant medication treatment of ADHD provided throughout childhood is comparable to the efficacy of stimulant treatment demonstrated in clinical trials.

There's something interesting about a medication that's this safe and effective. We don't see that very often in medicine, even physiologic substances like thyroid hormone have more side-effects.

Behavioral interventions: a bit of a fraud?

We're multi-year veterans of a range of neurobehavioral disorders. We also have medical degrees and attend a range of meetings that discuss the management of autism, ADHD, etc. Finally, we have access to a wide range of reputable and experienced psychologists, psychiatrists, social workers, medical subspecialists, etc. We have a healthy fear of longterm neurochemicals (drugs), but we use 'em and are pretty darned happy they exist. Even so, we're predisposed to prefer behavioral interventions.

Which is all to say, we ought to have a nice library of behavioral interventions at our fingertips.

If they existed.

Which, I'm beginning to suspect, they don't.

We've practiced everything we've been told, read about and invented that has any kind of evidence base, but it hasn't taken long to run out of ideas. We rely on a small set of moderately effective interventions and medication adjustment. It's been years since any specialist suggested a behavioral intervention that was new to us.

At the end of the day, I suspect there aren't that many useful behavioral interventions out there. The ones that work could probably fit on an index card, and their implementations could fit in a few short papers.

So here's my modest proposal. Until we get a wider range of behavioral therapies for ADHD, EBD, ODD, autism, CD and the rest of the alphabet -- let's be a bit more modest about how many good behavioral interventions really exist. Don't let speakers get away with vague references to "behavioral interventions" -- pin 'em to the wall and demand four examples. They won't mention the topic again ... :-).

Scrambled letters and reading disability, not to mention emergent memes and urban myths

This is fascinating on several levels. Today a colleague sent me the 'scrambled letter' email that's been bouncing around the net for a few years. His version looked like this:

I cdnuolt blveiee taht I cluod aulaclty uesdnatnrd waht I was rdanieg.

The phaonmneal pweor of the hmuan mnid Aoccdrnig to rscheearch at Cmabrigde Uinervtisy, it deosn't mttaer in waht oredr the ltteers in a wrod are, the olny iprmoatnt tihng is taht the frist and lsatltteer be in the rghit pclae.

The rset can be a taotl mses and you can sitll raed it wouthit a porbelm. Tihs is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe. Amzanig huh?;

Most people can read the text easily if they scan or defocus a bit, but it would be very difficult for a non-fluent reader to decipher the strings using a phonics approach. Thinking this over, I thought of a person I know who reads at the 2nd grade level (mostly) but seems to derive significant, measurable, meaning from 4th grade texts that he cannot read aloud. I wondered about a connection, so I googled on 'Cambridge scrambled words' and discovered a neat story of layers.

Matt Davis on the Cambridge scrambled letter meme

... Aoccdrnig to a rscheearch at Cmabrigde Uinervtisy, it deosn't mttaer in waht oredr the ltteers in a wrod are, the olny iprmoetnt tihng is taht the frist and lsat ltteer be at the rghit pclae. The rset can be a toatl mses and you can sitll raed it wouthit porbelm. Tihs is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe...

...This text circulated on the internet in September 2003. I first became aware of it when a journalist contacted a my colleague Sian Miller on 16th September, trying to track down the original source. It's been passed on many times, and in the way of most internet memes has mutated along the way. It struck me as interesting - especially when I received a version that mentioned Cambridge University! I work at Cognition and Brain Sciences Unit, in Cambridge, UK, a Medical Research Council unit that includes a large group investigating how the brain processes language. If there's a new piece of research on reading that's been conducted in Cambridge, I thought I should have heard of it before...

I've written this page, to try to explain the science behind this meme. There are elements of truth in this, but also some things which scientists studying the psychology of language (psycholinguists) know to be incorrect. I'm going to break down the meme, one line at a time to illustrate these points, pointing out what I think is the relevant research on the role of letter order on reading. Again, this is only my view of the current state of reading research, as it relates to this meme. If you think I've missed something important, let me know...

Ironically the rest of the page, which Matt has added too in a haphazard fashion, is quite hard to follow. The paragraphs, essentially, are scrambled. (Cambridge is also mis-spelled in the URL, but that's obviously an example of dry English wit). Matt collects examples in languages with varied linguistic structures, demonstrates that not all scrambles are equallyl readable, references software for generating readable "scrambles", but then discovers the truth buried in the myth ...

... [later] I've found a ... page that tracked down the original demonstration of the effect of letter randomisation to Graham Rawlinson. Graham wrote a letter to New Scientist in 1999 (in response to a paper by Saberi & Perrot (Nature, 1999) on the effect of reversing short chunks of speech). You can read the letter here, or in a link to New Scientist, here. In it Graham says:

"This reminds me of my PhD at Nottingham University (1976), which showed that randomising letters in the middle of words had little or no effect on the ability of skilled readers to understand the text. Indeed one rapid reader noticed only four or five errors in an A4 page of muddled text."

It's possible that with the publicity offered by the internet, that Dr. Rawlinson's research might be more widely read in future. For those wanting to cite this in their own research the full reference is:

Rawlinson, G. E. (1976) The significance of letter position in word recognition. Unpublished PhD Thesis, Psychology Department, University of Nottingham, Nottingham UK. (summary here)

So Dr. Rawlinson's unpublished 1976 thesis (31 years ago) has come to worldwide attention as the result of a propagating urban myth that's not a myth, and this story is best illustrated by a chaotic and scrambled web page that further extends the original work across multiple languages and references newer software for generating readable scrambles.

Now that's a strange loop, and quite post-millennial. The world-mind evidently decided that this research should not be ignored indefinitely. I look forward to Dr. Rawlinson's future television career ...

Diagnosing autism more frequently - means what?

The Strib, our local paper (now on life support) had an impressive graph on the front page yesterday. Alas, the (feeble) web site lacks the graph, which was a typical exponential growth curve implying that within 20 years every child will carry the diagnosis of autism [4].

So what does the increase, and the current estimate from a recent CDC study of 1/150 children, mean? First, here's some text from the article (emphases mine) ...

Autism everywhere
By David Peterson, Star Tribune
Last update: April 09, 2007 – 11:55 PM

... The number of kids classed as autistic is exploding. A recent study by the federal Centers for Disease Control and Prevention reported that autism is found in one in 150 children -- and researchers involved in the study say that may be an understatement. In Minnesota schools, the state's Department of Education reports, the number of students identified as autistic jumped from fewer than 1,000 students a decade ago to nearly 10,000 today.

In months, three committees of the Minnesota Legislature will hold hearings to explore the reasons why. "Special ed costs are exploding," said Roseville DFL Rep. Mindy Greiling, who chairs the K-12 division of the Minnesota House Finance Committee. "People who know a lot about it tell us that it's not just that we're getting better at identifying autism, there is actually more and more autism," she said.

"Herbicides, pesticides, various pollutants can cause brain disorders in fetuses and babies, and we want to look at that, not only to save costs but save the human costs of these tragedies," Greiling said...

... Nationally, advocacy groups are expressing alarm, using the words crisis, epidemic, even national emergency to describe the increase. In Minnesota, however, advocates are more restrained. Mary Powell, executive director of the Autism Society of Minnesota, speaks of "dramatic" increases in caseloads but hastens to note that that's partly because the definition is widening.

A debate simmers over what's behind the increase. Some people blame vaccinations though extensive medical studies haven't found a link, according to MayoClinic.com. Others, like Greiling, point to environmental influences...

The Combating Autism Act of 2006, which President Bush signed in December, authorizes nearly $1 billion over the next five years to combat autism through research, screening, early detection and early intervention.

Autism intervention is costly. According to the United States Government Office of Accountability, programs for a school-aged child with autism costs $18,800 per year compared with $12,500 for average special education per pupil expenditures.

"We struggle almost every day for resources for kids," said Dr. Dan McLellan, a pediatrician specializing in child development at Children's Hospitals and Clinics of Minnesota. The challenge for school districts is significant, said Anne Harrington, autism resource specialist for the Minneapolis schools. "We're scrambling to keep up with the needs."

Insurance companies, said McLellan, don't always help. "One big problem is that many decline coverage because contracts exclude 'developmental delays,' " he said. "We see it as a disorder. Some health plans still see it as a delay that schools can take care of."

A spokeswoman for the insurance industry said that varies according to the benefits package. "There is often a discussion of where the medical component leaves off and where the educational arena might begin," said Susan Pisano, vice president of communications for the Washington, D.C., trade group America's Health Insurance Plans.

... Researchers emphasize that they were prevented from using key data sources that would likely have pushed the ratio higher...

I'm willing to bet the increase has nothing to do with herbicides, pesticides, immunizations, mercury, gluten, etc (though if we were to find the prevalence is five times higher in China I might reduce the bet -- except it's not). We've not found any fruitful leads when exploring those domains -- despite a remarkably vacuous Discover magazine article that was enthusiastically received by the Autism Society of America. (Kudos, by the way, to Mary Powell of the MN society for a sober response in this article.)

So what's going on? There's a reason I emphasized one line in the article as bold and red. Diagnostic labels drive resources. Autism, like all disorders of the mind, lacks the insurance coverage given, say, cerebral palsy (a disorder of the brain with physically disabling manifestations). On the other hand, the label of autism delivers enhanced educational resources, whereas low IQ does not.

8% of the population has cognitive abilities in the bottom 8% of the population [1]. That's a rate of 12 in 150. If half these children get relabeled as autism the prevalence will reach 6/150, or 600% higher than it is now, before the trend levels off.

Why would children in the bottom 8% of the cognitive curve get relabeled as autistic, Asperger's, or "autism-spectrum disorder"? Because otherwise they won't get the educational resources they need and deserve. The definition of autism and autism-spectrum disorders is very problematic, and given the latitude to assign the diagnosis parents, teachers and clinicians will rightly do what's in the best interests of the child.

Consider this article from April of 2006 ...

Respectful Insolence: Evidence against an "autism epidemic"

... Shattuck analyzes special education figures that are being used to bolster claims of an autism "epidemic" and finds them wanting. In essence, diagnostic substitution can explain nearly all of the apparent increase of autism as recorded by the number of children receiving special education services.

...Dr. Shattuck starts with an example from a different condition, mental retardation as one of his reasons for suspecting diagnostic substitution as a cause of the perceived "epidemic":

...Second, prior research has established a precedent of diagnostic substitution in special education enrollment. From 1976 to 1992 the number of children in the mental retardation (MR) category decreased by 41%, whereas the number in the learning disabilities (LD) category increased 198%. There is considerable evidence that suggests this was because of a growing likelihood that schools would use the LD label for children with mild MR, presumably because a label of LD was increasingly seen as carrying less stigma than MR. Finally, a recent epidemiological study depicted a downward deflection in the incidence trend of other developmental disorders just as the trend for autism made a sharp upturn in the early 1990s, again suggesting the possibility of diagnostic substitution.

Shattuck has the data, but he's missed completely the driver. It's not "social stigma" (though autism, and especially Asperger's, is a much less depressing term than "mental retardation"), it's that most school systems don't deliver enhanced educational and social resources to children who are on the low end of the cognitive curve.

So, obviously, I think a lot of the growth in the diagnosis of autism-spectrum disorders is being driven by diagnostic substitution. I think the substitution is driven by a just and honorable desire to provide children with the educational resources they need in an increasingly complex, competitive, uncertain and demanding world. The substitution can occur without the necessity of deception because we don't have good models to categorize disorders of behavior and cognition.

BUT, is there anything else going on? Is there a "real" change in either the prevalence, or the nature, of cognitive disorders in children? What would we find if we compared the "bottom" [2] 8% of 1950 with the "bottom" of 2007? Would the minds measure out differently? My wife thinks there's a difference, and she's often right about such things. Old-time clinicians think their young patients look different. Does some of the "diagnostic substitution" reflect an underlying change in the nature of cognitive disability? Is there a real rise in the rate of disability?

Those are biologically interesting questions. I would not be surprised if there have been some real changes, but more on the level of a 50% increase or change rather than a 1000% increase. That's still, by the way we measure things, a pretty significant increase over a period of 10 years.

I suspect differential mating (like-marries-like) plays a role [3], and one can always speculate about environmental effects (ultrasound and neuronal migration?). If I had to really, really, speculate however, I'd wonder about an infectious disease process [4] ...

[1] I know it's a tautology. It's also important.
[2] It's important to remember that what puts one at the "bottom" of today's world might play out differently in another world. I suspect that for most of human history my eagle-eyed, hyper-alert, hyper visual processor son would have been supporting me rather than vice-versa.
[3] This, by the way, is probably how the human mind evolves. This should vary by country and culture so it's a testable hypothesis.
[4] Not to be confused with an immunization side-effect
[5] I made up the 15 years number, but eyeballing the curve that seems about right for an exponential-seeming process that increases 10 fold in 10 years.