Oxytocin: hope for autism and other social disorders?

The psychiatry I studied twenty years ago is, sadly, almost current today. We haven't really had many substantially new therapies (so much for the speed of medical advancement!). Lately, though, there are signs of a break in the drought. The endocannabinoids may one day provide us new therapies, and more recently oxytocin is looking very interesting:

NIMH: Trust-Building Hormone Short-Circuits Fear In Humans

...Scans of the hormone oxytocin's effect on human brain function reveal that it quells the brain's fear hub, the amygdala, and its brainstem relay stations in response to fearful stimuli....

... "The observed changes in the amygdala are exciting as they suggest that a long-acting analogue of oxytocin could have therapeutic value in disorders characterized by social avoidance," added Insel.

... Having just discovered decreased amygdala activity in response to social stimuli in people with a rare genetic brain disorder that rendered them overly trusting of others, Meyer-Lindenberg hypothesized that oxytocin boosts trust by suppressing the amygdala and its fear-processing networks.

To test this idea, he asked 15 healthy men to sniff oxytocin or a placebo prior to undergoing a functional magnetic resonance imaging (fMRI) scan, which reveals what parts of the brain that are activated by particular activities. While in the scanner, the men performed tasks known to activate the amygdala — matching angry or fearful faces and threatening scenes.

... People with autism characteristically avert their gaze from faces. A fMRI study4 reported earlier this year by NIMH grantee Richard Davidson, Ph.D., University of Wisconsin, and colleagues, found over-activation of the amygdala in people with autism when they were looking at faces. Meyer-Lindenberg said future studies may test oxytocin as a treatment for such social anxiety symptoms in children with autism...

Since Oxytocin is an "old" drug with existing FDA approval, there's a modest chance recent research may produce new treatments within 10 years. This particular result is not surprising given all the recent discoveries about Oxytocin and the amygdala, but it's still interesting and useful. The possibilities for treatment in autism, "attachment disorder" (assuming that's different from autism), and anxiety and paranoid disorders are tantalizing -- all conditions for which we have no effective medications.

I'd guess we have as much as a 20% probability of a new useful therapy -- which is pretty good in this world. Of course the probability of abuse is 100%. Colognes may again become popular among men ...

Autism-class social disorder correlates with blood flow to the inferior frontal gyrus

The researchers studied "high functioning" autistic children, so they were isolating "pure" social disabilities from the cognitive disorders common in many forms of autism. In this group a functional MRI study provided one of the first objective tests for evaluating autism:

Science & Technology at Scientific American.com: Lack of "Mirror Neurons" May Help Explain Autism

... Neuroscientist Mirella Dapretto of the University of California Los Angeles and her colleagues surveyed the brains of 10 autistic children and an equal number of nonautistic children as they watched and imitated 80 different faces displaying either anger, fear, happiness, sadness or no emotion. By measuring the amount of blood flowing to certain regions of the children's brains with a magnetic resonance imaging (MRI) machine, the researchers could determine what parts of the brain were being used as the subjects completed the tasks. The autistic children differed from their peers in only one respect: each showed reduced activity in the pars opercularis of the inferior frontal gyrus--a brain region located near the temple.

This section of the brain has been shown by other studies to be part of the so-called mirror neuron system, which allows humans to understand the intentions of other human beings by observing their actions or imitating their behavior. When damaged, it can interfere with speech.

Although the high-functioning autistic children were able to imitate the facial expressions, they had trouble understanding the corresponding emotional state. The study suggests that the incompletely activated mirror neuron system is to blame. In fact, the less blood that flowed to this region of the brain in each autistic child, the less social ability that child showed--providing more support for the apparent link.

These children could be said to suffer from 'isolated hypofunction of the inferior frontal gyrus' syndrome' (IHIFG Syndrome). If these results hold up we will be able to tease out some of the different conditions subsumed by the generic label of "autism".

Autism, communication disorders and FOXP2 mutations

The FOXP2 gene is currently thought to have been a critical factor in the evolution of human communication. It may be one of the things that allowed the pre-human primate to dominate the world.

Researchers are exploring whether mutations in FOXP2 may be associated with communication disorders, of which autism may be considered one example:

Entrez PubMed - Am J Hum Genet. 2005 Jun;76(6):1074-80. Epub 2005 Apr 22. Identification of FOXP2 truncation as a novel cause of developmental speech and language deficits.

FOXP2, the first gene to have been implicated in a developmental communication disorder, offers a unique entry point into neuromolecular mechanisms influencing human speech and language acquisition...

...Our discovery of the first nonsense mutation in FOXP2 now opens the door for detailed investigations of neurodevelopment in people carrying different etiological variants of the gene. This endeavor will be crucial for gaining insight into the role of FOXP2 in human cognition.

Aging Americans prefer "disciplined" children

I didn't really have the heart to read much beyond the lead of this article: Kids Gone Wild - New York Times. It's perfectly predictable that aging boomers with older children will lose their tolerance for younger children. Predictable, but tedious.

This is a minor matter for most, though the enthusiasm for "discipline" is likely to lead to more use of physical punishment. I expect spanking to become fashionable in a "naughty" sort of way. We will rediscover that it is very hard to hit in a measured manner. Some lessons need to be relearned every twenty years.

It is not a minor matter for autistic, severe ADHD and other special needs children. We can avoid restaurants and public places (though the price may be high for our children), but we do need to take planes, trains and airplanes. The scorn and loathing of the privileged will now be amplified by the righteous indignation of those scorning our lack of "discipline".

It's good training for me to bear such scorn, and perhaps it will chop another thousand years off my stay in purgatory. It will be harsh on our children however. May God spare me the intolerance of the aging when my time comes.

Ironically we do have one "perfect" child, who even at 3 dines with grace, style, and uplifted pinky. It has nothing to do with discipline or training, it is simply her nature. We gracefully accept the associated praise when she alone dines with us, as well as the envious stares of other parents. If only they knew ...

The cruelty of the autism quack

Prometheus debunks the toxic quackery of Dr. Buttar, a cruel parasite upon autistic children and their families. I think I can understand the terrible desperation that drives some parents into the arms of quacks and frauds; but those that prey upon them are the kin of Philip Morris and the corner meth dealer. I'm no libertarian; I think one of the responsibilities of government is to protect these parents and their children -- especially since some of these therapies may be toxic. Even if they are not directly toxic, they suck money and resources that should be used elsewhere.

The old-time Democrats and Republicans were equally guilty of failing to protect vulnerable families from such quackery, but our current regime takes neglect to new levels. The Bushies attacks on logic, rationalism and science only strengthen Dr. Buttar and his peers.

Autism and hypnosis: an interesting research possibility?

I studied hypnosis as a medical student. It was fascinating, but I never did work it into my clinical practice. For one thing, it takes practice to do and time to apply. I'd mostly forgotten about that course, but a New York Times review brought some of it back. The article's research descriptions of hypnotism, belief, perception, and the relationship to hyperconcentration led me to wonder how the studies would work if the subjects were autistic. How would the functional MRIs compare? A google search finds many uninteresting references to hypnotism and autism, but a PubMed search comes up with almost nothing. An interesting research opportunity?

Very annoying: the diagnostic criteria for Asperger's are not all that useful

More confirmation that Asperger's is a very vague clinical concept.

Three diagnostic approaches to Asperger syndrome: implications for research
J Autism Dev Disord. 2005 Apr;35(2):221-34.
Klin A, Pauls D, Schultz R, Volkmar F.
Yale Child Study Center, 230 South Frontage Road, New Haven, CT 06520, USA. ami.klin@Yale.Edu

OBJECTIVE: To examine the implications for research of the use of three alternative definitions for Asperger syndrome (AS). Differences across the three nosologic systems were examined in terms of diagnostic assignment, IQ profiles, comorbid symptoms, and familial aggregation of social and other psychiatric symptoms. METHOD: Standard data on diagnosis, intellectual functioning, comorbidity patterns, and family history were obtained on 65 individuals screened for a very high probability of having autism without mental retardation (or higher functioning autism, HFA) or AS. Diagnoses of AS were established based on three different approaches: DSM-IV, presence/absence of communicative phrase speech by 3 years, and a system designed to highlight prototypical features of AS. RESULTS: Agreement between the three diagnostic systems was poor. AS could be differentiated from HFA (but not from PDD-NOS) on the basis of IQ profiles in two of the three systems. Differences in patterns of comorbid symptomatology were obtained in two of the three systems, although differences were primarily driven by the PDD-NOS category. Only one of the approaches yielded differences relative to aggregation of the "broader phenotype" in family members. CONCLUSIONS: Diagnostic assignments of AS based on three commonly used approaches have low agreement and lead to different results in comparisons of IQ profiles, patterns of comorbidity, and familial aggregation of psychiatric symptoms across the approach-specific resultant groups of HFA, AS, and PDD-NOS.

Researchers need to find more reliable ways to partition their study groups. Asperger's and Autism in general is a "garbage bag" type of diagnosis and is likely to be eventually retired.

Half of Aspergers children have ASD in paternal family history

Half of boys with asperger syndrome have a paternal family history of ASD.

Entrez PubMed J Autism Dev Disord. 2005 Apr;35(2):159-66.
Asperger syndrome: familial and pre- and perinatal factors.
Gillberg C, Cederlund M.
Department of Child and Adolescent Psychiatry, University of Goteborg, Sweden. christopher.gillberg@pediat.gu.se

OBJECTIVE: Study familial and pre- and perinatal factors in Asperger Syndrome (AS). METHODS: One hundred boys with AS had their records reviewed. "Pathogenetic subgroups" were defined according to presence of medical syndromes/chromosomal abnormalities, indices of familiality, and pre- and perinatal risk factors predisposing to brain damage. RESULTS: No major index of pathogenetic factors was found in 13%, a syndrome/chromosomal abnormality in 8%, pre- or perinatal risk 13%, combined pre- or perinatal risk and family history in 11%, and family history only in 55%. COMMENT: About 50% of all boys with AS have a paternal family history of autism spectrum disorder. Pre- and perinatal risks appear to be important in about 25% of cases.

Why paternal only? Might be an artifact of males being more vulnerable to expressing the genetic foundation of the disorder, since the "father" is a large part of paternal history.

Clarifying autism: two types of core behaviors vary independently

More guidance in understanding autism. Core traits, like social impairment and obsesssions, don't necessarily go together.

The genetic relationship between individual differences in social and nonsocial behaviours characteristic of autism.

Dev Sci. 2005 Sep;8(5):444-58. Related Articles, Links
Ronald A, Happe F, Plomin R.
Social Genetic and Developmental Psychiatry (SGDP) Centre, Institute of Psychiatry, King's College London, UK. a.ronald@iop.kcl.ac.uk

Two types of behaviours shown in children - those reflecting social impairment and nonsocial obsessive repetitive behaviours - are central to defining and diagnosing autism spectrum disorders (ASDs). Parent and teacher data on social and nonsocial behaviours were obtained from a community sample of >3000 7-year-old twin pairs. Social and nonsocial behaviours were only modestly correlated, and it was found that some individuals had extreme scores on either social or nonsocial scales but not both. Genetic model-fitting showed that social and nonsocial behaviours are both highly heritable, but their genetic overlap is modest, with most of the genetic influence being specific to either social or nonsocial behaviours. Considering these behaviours separately might help clarify gene-brain-behaviour pathways in future research.

The impliction is these are different genetic syndromes, and clinical autism occurs when an unlucky child gets stuck with either an extreme form of one of them or parts of both. It also relates autism more closely to OCD.

Synthesasia and high IQ autism - case report

[original point via medlogs]

Daniel has fairly severe autism, a high IQ, some extraordinary intellectual abilities, and synesthasia. It's an unusal combination; such case reports define new countries of the mind. Daniel is a generous explorer. One of the most interesting aspects of his story is that he appears to have compensated for some of his core autistic disabilities ...

ABC News: Savant Gives Window to World of Autism

June 11, 2005 — - Daniel Tammet of England can verbally reel off the number pi to 22,500 decimal places in just over five hours -- though he admitted after a recent demostration that it made him "very tired."

Tammet, 26, is a phenomenon. He has done lots of amazing things -- like learning Icelandic, one of the world's most difficult languages, in just seven days.

That's because Tammet is an autistic savant. His extraordinary abilities stem from a combination of autism and a condition known as synesthesia...

... There are perhaps fewer than 50 autistic savants in the world, according to estimates by experts. Those few are people with remarkable, often staggering skills and challenges.

... he doesn't like to come to a beach just a few minutes from his home because it is made up of pebbles — too many even for him to count. That makes him uncomfortable.

Tammet can't drive or do many other things that require basic coordination. Just walking is something he had to do through an effort of will.

"I had to teach myself how to look and how to walk," he said, "how to move myself, how to coordinate myself without falling over, without looking down, without getting absorbed in my own self, my own world."

... After years of effort, Tammet has overcome many of his autistic disabilities. Now living outside of London, not only can he relate to people, he can describe what the experience of autism is like from the inside.

He loves silence, for instance.

"I experience it as like a silvery texture around my head, like condensation running down a window," he said. "If there's a sudden noise, it's like a shattering of that feeling."

... one might say Tammet has come back from the country of autism, which is a very difficult place for researchers and for parents to reach.

"I've come from a place where I felt so lonely, and so unwanted in a way," Tammet said. "And I've come along this road, and I've found this bridge, and I've come across it. And I don't know how, I don't know why, but I'm here and I'm able to talk to you today. And, for me, that's amazing."

There's an emerging meme in autism and brain research that in some people a specialized brain subsystem can compensate for a deficit in a related subsystem. Perhaps the frontal cortex, for example, may compensate for missing capabilities in the prefrontal cortext. If this does occur we may be learn to induce such compensation through training and therapy, even in children and adults who are not gifted.

Autism-like findings in relatives of autistic children and the evolutionary biology of autism

I came to this reference via medlogs. It's quite fascinating. The more we learn about congenital structural and organizational disorders of the brain and mind, like schizophrenia and autism, the more oddity we see in how they're expressed. Here we learn that some structural aspects of "autism", a "disorder" that seems to be strongly inherited, may manifest in high functioning "non-autistic" adults ...

Brain deficits found in relatives of autism sufferers
Unaffected family members show characteristic abnormalities.
Jim Giles

People can have physical brain abnormalities similar to those found in autistic individuals without having the disorder themselves. These results come from two studies, which were presented at a conference over the weekend. Brain scans show striking similarities between the brains of autistic patients and those of their non-autistic parents and siblings.

... In one study, Eric Peterson of the University of Colorado at Boulder and his colleagues scanned the brains of 40 parents of autistic children and compared the results with functional magnetic imaging (MRI) scans from 40 [jf: normal, non-related] controls. The data look much like those obtained for comparisons between autistic and non-autistic brains, says Peterson. The results were discussed on 13 November at the annual meeting of the Society for Neuroscience in Washington.

Some areas of the brain region known as the prefrontal cortex were smaller than normal in the parents of autistic children, for example. This part of the brain is involved in understanding other peoples' motivations, something that autistic people find difficult and is thought to lie behind the problems they face in interacting socially.

Another typical symptom of autism is the tendency to avoid making eye contact. This behaviour was studied by Brendon Macewicz and colleagues at the University of North Carolina, Chapel Hill. He gave nine families with an autistic child and unaffected brother a digital camera and told them to take pictures of friends and family. Macewicz then mixed up the shots with images of strangers and tracked the childrens' eye movements while asking them to say whether the people they saw in the pictures were familiar or not.

Most people rely heavily on looking at the eyes when asked to complete this task. But autistic children are known to avoid the eyes and focus on other areas of the face. To Macewicz's surprise, the non-autistic siblings did almost exactly the same.

"This piqued our curiosity," he says. The team then ran MRI scans on the brothers, focussing on the part of the brain known as the amygdala. This area is involved in fear and is typically smaller in autistic people. "It was very interesting," says Macewicz. "The children showed a similar decrease in amygdala size to their autistic siblings." The difference was around 5-10%.

The results are intriguing, say the researchers, because the parents and siblings had not been diagnosed with autism. Macewicz says it is likely that in the unaffected siblings other brain areas, perhaps in the frontal lobes, are helping to regulate the amygdala and compensate for its smaller volume.

It may be that a core set of brain abnormalities has to be present for autism to occur, adds Peterson, and that the parents he studied do not have them all. He points out that some autism-related behavioural traits have previously been seen in the relatives of people with the condition, but that these current studies are among the first to show similarities in brain anatomy.

The clinical concept of "autism" is very vague. It's a"diagnosis" made by school systems, social services, psychiatricsts, psychologists, and researchers. There are children than all would label "autistic", but there's no doubt the concept is itself ill-defined. The group studied here is probably more homogenous than the general "autistic" population.

The results are fascinating. I do wonder how many of the parents would have been labeled as "autistic", were they children today.

This study lends credence to the "Silicon Valley nerds" theory of the increasing prevalence of autism -- that many high IQ "autistic" children are the result of increased rates of marriage between persons with autistic traits, who congregate in the tech indutries. It also strengthens the long suspected link between pre-autistic traits and "geekiness".

Classic autism is not a very adaptive condition in most human environments. Autistic children would probably die quickly in a harsh environment. So why is autism a relatively common disorder? We know from many, many examples in human evolution that a serious genetic disease (ex. sickle cell anemia) will persist when some of its component traits have adaptive advantage. It's very likely that some pre-autistic "traits" or genetic components have adaptive advantages.

I would like to know what the correlation of autism is in identical twins ...

Update 2/24/07: Correlation in identical twins can be very high, probably depending on the subtype of "autism":

... different studies have shown that if one identical twin has autism then there is a 63-98% chance that the other twin will have it. For non-identical twins (also called fraternal or dizygotic twins), the chance is between 0-10% that both twins will develop autism. The chance that siblings will be affected by autism is about 3%.

The population risk is supposedly about .7%, so siblings have about a 500% relative risk. The large spread in co-occurrence for twins is very compatible with diverse genetic causes; again we see that the word "autism" is used for a wide variety of distinct but unnamed disorders.

iPods for visually impaired users

Helpful for audio book use by the visually or motor impaired:

MacInTouch: timely news and tips about the Apple Macintosh

We also received suggestions about making iPods friendlier for elderly users:

[Dan Frakes] Laurence Mettam was looking for a 'large size external remote-control for an iPod.' Of the remote controls currently on the market, the one with the largest buttons is Kensington's Stereo Dock, which also includes an AC-powered dock base for connecting your iPod to your home stereo. Although the remote is basic -- just play/pause, forward/back, and volume up/down buttons -- the buttons are fairly large, backlit, and easy to use. You can see a picture of the remote here.

[Joe Savelberg] Laurence Mettam asked about a remote control for the iPod. Griffin Technologies produces the AirClick, which is a remote control with large buttons. Hope this helps.

[MacInTouch Reader] Regarding the enquiry about remote controls for iPods, another alternative would be to buy the new Apple Universal Dock and Apple Remote, along with any suitably-sized universal learning remote control (for example, Sony [URL below] sells a few with fairly large buttons). Then duplicate the controls from the Apple Remote to the universal remote. I haven't tried this, but in theory it should work. For thorough reviews of universal remotes, Remote Central is a great place to go.

VoiceOver: a partial screen reader built into OS X

Apple - Mac OS X - VoiceOver

As our population ages, this technology will be better supported. OS X lacks 3rd party accessibility solutions, but is adding them into the OS. Not fast enough though.

Assistive Technology Software for Mac OS X

Assistive Technology Software for Mac OS X

A gene for dyslexia

At last. If this holds up the implications are vast. We will be able to clearly identify one subtype of a common learning disorder. We'll be able to identify variations in the associated phenotype, and match therapies to the gene. We will gain vast insights into the bizarre miracle of reading (note to intelligent design folks -- the evolution of reading is much more interesting than the evolution of the retina).

This gene modulates the "migration of neurons", it is presumably one of a class of genes that determines the very structure of the human brain. Alter these genes, alter that which makes a human.

Wonderful news.

Less wonderful if it becomes part of a prenatal profile that may lead to abortions. This is a future we knew was coming.

BBC NEWS | Health | Scientists discover dyslexia gene

Up to a fifth of dyslexia cases could be caused by a faulty version of a gene called DCDC2, scientists believe.

In the mutant form, DCDC2 leads to a disruption in the formation of brain circuits that make it possible to read, say the Yale team.

Their finding could lead to earlier diagnosis of dyslexia, meaning educational programmes for dyslexic children could be started earlier.

The work is published in Proceedings of the National Academy of Science.

The gene is located on chromosome six and Dr Jeffrey Gruen and his team at Yale School of Medicine believe it causes as many as 20% of dyslexia cases.

Dyslexia covers a range of types of learning difficulty where someone of normal intelligence has persistent and significant problems with reading, writing, spelling.

Up to six million Britons are believed to have dyslexia - 4% of the population is severely dyslexic and a further 6% have limited problems.

Other genes have already been linked to dyslexia.

... Dr Gruen said; "The gene itself is expressed in reading centres of the brain where it modulates migration of neurons. This very architecture of brain circuitry is necessary for normal reading...

Reading disabilities workshop 10/26 at Groves Academy

Grove Academy is doing more community outreach. First is a series of workshops is one on reading disabilities:

Groves Academy announces the first community workshop in a six-part series of workshops focused on topics specific to learning disabilities.


Workshop: Reading Disabilities: Identification and Intervention
Speaker: John Alexander, Groves Academy Head of School, M.Ed., Harvard University
When: Wednesday, October 26, 2005, 7pm – 8:30pm
Where: Groves Academy, 3200 Highway 100 South, St. Louis Park
Admission: Free and open to the public
Registration: Reservations required. Call 952-920-6377

Workshops will be approximately one hour long with 30 minutes of questions and answers afterward. Other workshop dates are 11/29/05, 1/31/06, 2/23/06, 4/20/06 and 5/16/06.

The evolution of attention-deficit disorder (ADHD)

ADHD trait is very common in north america. It is logical to assume that this trait has some adaptive advantages in some settings. The genetics of that advantage is being actively studied:

John Hawks Anthropology Weblog : Recent human brain evolution and population differences:

Geneticists are increasingly finding genetic variants that affect behavior. Several of these variants are now known to vary in frequency in different human populations. These alleles are two; the 7r allele of the dopamine receptor D4 (DRD4) gene is another that influences ADD/ADHD susceptibility (Harpending and Cochran 2002). The selective structure underlying DRD4 variation may be frequency-dependent, with different alleles correlating with alternative behavioral strategies that pose greater or lesser advantages in some populations.

A trait which is a disability in some educational and employment settings may be an advantage in other times and places.

A successful behavioral intervention in two siblings with autism spectrum disorder

Autism Forum and Chat

When Child A called his sibling, Child B, names, child B received a dime. The name calling crisis resolved with remarkable speed.

Autism Forum and Chat: The number one Google ranking

When you search Google on autism and forum, this comes up first: Autism Forum and Chat

There are parts of the UK which are yet 19th century -- criminalizing the defective

BBC NEWS | Health | Tourette's children 'given asbos'

This is not the first time I've come across examples of this. The UK's legal system has some curious aspects to it; in particular certain legacies of the 19th century. One of those legacies is a very backwards approach to children with cognitive disabilities. They seem to be fairly readily shunted into the a kind of 19th century, or perhaps medieval, justice system:

In one case, a 12-year-old autistic boy was punished for staring over his neighbour's fence; another boy with Tourette's Syndrome was given his order for constantly swearing.

Because Asbos are regarded as civil matters, they are dealt with by an adult court, rather than by a justice panel especially designed for children.

This means that if the children breach their Asbos they do not have the same rights to social and mental health reports as 'criminal' juveniles (aged up to 17)...

... Julie Spencer-Cingoz, chief executive of Bibic and a trained psychiatric nurse, said children were being criminalised because of their medical conditions.

"It is a little like saying to somebody who has epilepsy 'do not fit'. And then when they do fit saying that they have broken their contract.

"You would not do that, and yet we are applying the same conditions to children with other medical conditions.

I'm not used to thinking of the US as being at all 'progressive', but in matters of disability we made such enormous progress under Bush I and Clinton that not even Bush II has been quite able to utterly undo it.

Autism gene - at least one of them?

BBC NEWS | Health | 'Gene test' for autism in sight

This sounds like it could be extremely helpful for ongoing research. I suspect it won't have clinical implications for some time -- if ever. The relatsionship to the cerebellum is interesting; I've long been interested in the remarkable problems some children with autism have at hitting a baseball. It seems almost a pathognomic feature.

By analysing the DNA from these individuals they found a region on chromosome 16 - PRKCB1 - appeared to be linked with autism.

PRKCB1 is expressed in granule cells in the cerebellum of the brain. Its associated protein is involved in transmitting signals from the granule cells to the Purkinje cells. Both these cells help relay messages in and out of the brain.

Researchers have already found a decreased number of both granule and Purkinje cells in the brains of people with autism.

A thoughtful defense of 'No Child Left Behind' in the suburbs

School Reform Moves to the Suburbs - New York Times

Salon and the Thimerosal conspiracy

Salon.com News | Deadly immunity

Salon has a long article alleging a widespread conspiracy on the part of clinicians, government agencies, and scientists to conceal a link between Thimerosal, a vaccine preservative, and autism.

The author lost me at when he claimed a heroic researcher who'd uncovered this connection had switched to the dark side and buried the data:

By the time Verstraeten finally published his study in 2003, he had gone to work for GlaxoSmithKline and reworked his data to bury the link between thimerosal and autism.

Scientists and researchers aren't always trustworthy. The risks of mad cow disease were underestimated by UK scientists, but so were the estimates of activists. Even so, this article reads like it's straight from the tin hat brigade. Physicians are notorious blabber-mouths; there's no way they could keep such a conspiracy going.

As best as I can tell, the Institute of Medicine is reasonably trustworthy. They felt we should look elsewhere to explain autism. I wouldn't say a connection to Thimerosal is impossible, but we have only so much time and money. Let's try looking at terrain that's not been so well walked.

When would I consider looking at Thimerosal again? I don't believed it's used much anymore. If the incidence of autism nosedives in areas where Thimeraosal is no longer used, then I'd say reverse course and resume the conspiracy investigation. If not, then forget about it.

PS. Someone has done a rather good job of dissecting the Salon article. He thinks it's nonsense and shows why. I'm adding skeptico to my bloglines!

Faxing and special needs children

Parents of special needs children are essentially running a small home business. Fax is a particularly annoying problem -- faxes to educators, clinicians, agencies, government, etc. This article reviews various Fax approaches, including MaxEmail (favored) and Innoport (good): Gordon's Notes: Fax and Voicemail to email: MaxEmail and more.

One advantage to Internet fax to email is that it's a cheap way to file and retain documents that are faxed, though MaxEmail does not store the faxes sent from their service.

Oxytocin nasal spray for attachment disorder?

Hormone oxytocin makes you trust strangers more with your money

I'm not sure "attachment disorder" is a useful classification, but it's popular in the special needs and adoption worlds. Whatever the fundamental pathophysiology, I wonder how long it will be before we start seeing therapeutic trials using oxytocin nasal spray. It will be a long time, however, before such a treatment would get FDA approval...

The hormone, oxytocin, produced during childbirth and lactation - encourages us to trust strangers, it is also a hormone which gets mammals to mate. Swiss researchers have found that when people are given some of this hormone they trust people who are handling their money much more.

Another study on the superiority of phonics

BBC NEWS | UK | Education | Primary reading lessons reviewed

A stuck clock tells time twice a day, and social conservatives are not always wrong:

In a project in Clackmannanshire, all children were exposed to synthetic phonics throughout primary school - almost to the exclusion of other methods.

When tested at age 11, they were found to be three years ahead of their contemporaries across Scotland in reading.

Renting motor homes: special needs vacations.

MotorHomeRentals.Com

Oddly, it never occurred to me that one could rent these things. Rentals, timeshares and other variants of shared ownership make far more sense than keeping one of these beast unused for 98% of the year.

For some children with special needs, a motor home trip may work better than a van or plane trip.

Autism and infectious diseases

Entrez PubMed: autism and etiology

The recent press about mass profile of unusual blood chemistries statistically correlated with autism led me to review the medical literature on autism etiology. I did my best to exclude MMR immunizations; that seems relatively unlikely as a contributing factor. I was interested in mention of infectious agents.

I didn't come up with very much. The literature is a confusing stew of hypotheses, with none seeming to lead. Part of the problem, of course, is that the wide range of entities we call "autism" may represent several different conditions. Even the most "classic" autism may represent many processes with similar outcomes. It's pretty hard to sort out such an ill-defined target.

If there's any fashionable correlation with infection it works on the assumption that some autism subsets are caused by an autoimmune reaction to a common virus or insult that happens to damage brain tissue. There's also a tendency to look for common causes of both autism and celiac disease; these conditions have some superficial similarities.

If autism has an autoimmune and infectious component, and if the frequency is rising in wealthy nations, they one would wonder if it was a "hygiene disease". These are diseases thought to arise from the absence of early infections; chickenpox, for example, is a much more dangerous disease in middle-age than in childhood.

All very speculative. Progress will probably come from studying well defined familial autism syndromes that may be more homogenous.

Autism and the Corbett blood chemistry study

Strong evidence of alterations in blood samples of children with autism

This was, to me, a novel approach. NPR had better coverage than this news article; SurroMed was able to measure thousands of paremeters and compare them to a control group. A fairly large number seemed statistically different. The theory is this can work like digital 'fingerprinting' or 'dna matching'; without regard to mechanism of action it may be possible to define an "autism profile" of lab results. It's a very statistical approach to screening -- similar to factor or regression analysis; the correlated findings may be predictive but not "causal". Fascinating. I'd read predictions of this particular approach, but this is the first study where I've seen it at work.

The next step will be to try to identify a practical 'profile subset' and then test it in children to see if it's predictive, using blood samples from a group other than the group used in this study. That work has probably been done and may be published shortly.

Amaral along with pediatric neuropsychologist Blythe Corbett and other M.I.N.D. Institute colleagues took blood samples from 70 children with autism who were between 4 and 6 years old and from 35 children of the same age who didn't have the disorder. The samples were then analyzed by a biotech company, SurroMed, LLC, Menlo Park, Calif., which has developed technology that can identify differences in the number and types of immune cells, proteins, peptides and metabolites in small amounts of blood.

The study has generated an enormous amount of data and M.I.N.D. Institute researchers say it will take months before all of the information has been fully evaluated. But initial findings clearly demonstrate differences in the immune system, as well as proteins and other metabolites in children with autism:

-- The antibody producing B cells are increased by 20 percent in the autism group

-- Natural killer cells are increased by 40 percent

-- More than 100 proteins demonstrated significant differential expression between the autism and typically developing groups

-- Other small molecules (metabolites) also show many differences

Overview of trends in reading -- the phonics renaissance

Learning to read by ear

Nothing new here, but a nice overview.

The Mobile Phone for children -- and for some adults as well?

Firefly Mobile: The Mobile Phone for Mobile Kids

This is a "cute" and attractive mobile phone targeted at young children. It may have other uses as well however. It's robust, inexpensive (cheap to replace) and designed for simplicity and ease of use. It may be appropriate for older children with cognitive impairments or for elders who are overwhelmed by typical cell phones (eg. almost everyone over 70).

Product Information:

    * Works on GSM 850/1900 MHz networks
    * Internal antenna
    * Rechargeable, nonremovable lithium ion battery
    * Up to 6 hours talk time
    * Up to 205 hours standby time
    * Size: 3.46" x 1.75" x 0.79"
    * Weight: 2.12 ounces
    * Dual language capabilities: English and Spanish

Fun for Kids:

    * Firefly Fireworks™ light display flashes when making and receiving calls, during standby, and when charging
    * 12 ring tones to choose from
    * 5 animations to choose from
    * 7 LCD screen backlight colors to choose from

No Sweat for Parents:

    * Speed-Dial Mom, Dad, and Emergency calls
    * PIN-protected Phone Book with up to 20 numbers
    * Optionally rejects calls from numbers not in Phone Book
    * Missed call indicator and list

Special Education News and Links: S&P Opens A Rating Service On Schools

Special Education News and Links: S&P Opens A Rating Service On Schools (washingtonpost.com)

ADHD teacher evaluation scale

Family Medicine Notes

In addition to being useful for clinicians, it's also an interesting overview of the kinds of observed behaviors seen with adhd.

Five siblings with varying flavors of autism spectrum disorder

USATODAY.com - Autism's echoes fill this home

We sometimes feel challenged, but we know we're still in the 'minor leagues'. This family is in the major leagues. Of their six children two have classic severe autism, one has Apsergers, two are "PDD/NOS" (autism spectrum disorder) and one is "normal" (aka "mundane"). Aside from the staggering parental burden the range of presentations is astounding. This collection of genetic siblings with diverse presentations has shifted me back towards the traditional school of thought that Aspergers, PDD and classic autism actually have some common underlying pathophysiologies.

USA Today complements this article with a good autism overview.

Really, a nice set of articles. Good journalism. I must also extend my respect and appreciation to this family, and to thank them for the help they're providing to autism researchers.

PS. Tonight Blogger, the service that hosts this blog, is again almost completely dysfunctional.

Suicide risk and parent/child IQ discrepancy

Boston.com / News / Boston Globe / Ideas / Suicidal tendencies

The Boston Globe summarizes a British Medical Journal review article on suicide risk for men. This is a well written newspaper article; actually, it reads more like a review in a medical journal:

... Men with low IQ scores and only a primary education were no more likely to kill themselves than men with high IQ scores and a higher level of education. But men with low IQ scores and higher education were at a greater risk of suicide. And men with low IQ scores and highly educated parents were at the highest risk of all...

...the ''Comprehensive Textbook of Suicidology,'' published in 2000 and coedited by Berman, lists at least 62 independent risk factors for suicide, including mental disorders, alcoholism, substance abuse, social isolation, poor problem-solving, problems with aggression and rage, a sense of worthlessness, and a sense of hopelessness.

Most of these factors stem from beliefs people hold about their lives and the world but-crucially-not from intelligence. ''IQ can't be changed significantly,'' said Thomas Ellis, a psychology professor at Marshall University. ''But with therapy, many of these other risk factors can.''

This is of obvious interest to parents of children in special needs programs. We can invent all kinds of potential explanations and possible interventions, but we really don't have enough data for informed speculation.

One important limitation. The study measured IQ among Swedish men at age 18 (military service) through 44. It therefore 'missed' suicides prior to age 18 and after 44. It may the study identified a subgroup who's suicide risk is above average during this interval, but lifetime risk might be higher in other groups.

Tentatively, I'd suggest that high IQ parents of low IQ children might follow developments in 'suicidology' and focus on early detection and the use of 'recommended' interventions. For complex reasons I'm skeptical about the evidence base for 'suicidology', but it's the best we have to go by.

Write:OutLoud from Don Johnston: preliminary review

Write:OutLoud SOLO, Don Johnston Incorporated

Our school asked me to take a look at an old copy of "Write:Outloud" from Don Johnston Inc. This is a text reader and simple word processor application targeted at children with reading and writing disabilities. Kurzweil has a much more ambitious, expensive and more complex application in the same space.

I'd never heard of WOL; Don Johnston Inc appears to be a one person business based in Volo, IL.

The CD I have is version 3.0 - it was released in 2000. The current version, according to the web site, is slated for release 3/05. From the screenshots they look fairly similar.

The CD contains a Mac and Windows version. The Mac installer would not install in OS X. The Windows installer installed in both Windows 98 and XP SP2. Installation was simple; it takes up about 17MB of disk space. That's nothing nowadays, I've installed hardware device drivers that require more resources.

The PC version installs a runtime version of IBM's ViaVoice text to speech generator. Both OS X and XP have built-in text to speech generators with similar sounding voices (that "Flo" got around!), Windows 98 has nothing.

This is a very simple and straightforward application with abundant documentation -- though I just fired it up and started using it. It lets you author text or open a text document. It will open txt documents or .WOL format files. You can copy and paste text from anything else. You can highlight words or paragraphs and WOL reads the text.

Did I mention this was a simple application?

In theory OS X has built-in services to do this, but WOL provides keyboard and mouse interfaces to make this easy. You can vary text size, color and background color to help children with visual disabilities.

I assume the 3/05 version will run on OS X (in Classic emulation probably). I'll ask and post an update here. More experiences to come.

Update: A Don Johnston support person tells me OS X will be supported with the new release. She thought it would run as a "native app" under OS X, that would be nice but a bit surprising. Most small vendors typically revise their "classic" apps to work with OS/X.

Autism and mainstreaming: beyond the 3rd grade

The New York Times > Health > As Autistic Children Grow, So Does Social Gap

I've been thinking about this article throughout the day. Here's the article, I've comments below. Emphases mine. The author is writing about kids with generally above average IQ and very low "EQ" (social skills). All have been diagnosed as having autism, presumably Aspergers in some cases.

... these high-functioning children face a host of new problems as they approach adolescence, when social interactions become more complicated. Parents, educators, researchers and clinicians all say that the majority of such children become conspicuous in the third grade and are bullied or ostracized by the time they reach middle school.

Dr. Sandra L. Harris of Rutgers University, a pioneering educator and researcher in autism, said advances might have fed false hopes. "The intellectual skills of some of these children may lead people to expect more than is possible socially," Dr. Harris said. "They miss so much nuance that it can't be fixed in a 100-percent way. That was the hope. Now we know it's more elusive than that."

Christine Grogan, the director of a school for autistic children in Paramus, N.J., urges educators to be cautious about what they promise parents, adding, "There are many people in the field giving false hope" about whether remaining in the mainstream is realistic for more than a tiny number of children over the long haul.

Virtually nothing in the social arena comes naturally to autistic children. They must be taught how to have a conversation. To show empathy by asking questions. To resist arcane topics that do not interest others. Not to talk too loudly or to stand too close to the other person. To master the vocabularies of sports and flirting.

Even those with I.Q.'s above average struggle to read body language or to imagine what other people are thinking. If they learn a joke, they may tell it a dozen times. They are too literal-minded to understand white lies and too rule-bound to understand they should not tattle. They overreact to routine teasing and invite ridicule by carrying their books over their heads or accepting a dare to kiss a girl...

...Autism experts say that social skills training is the new frontier and that the burden has shifted from special schools and one-on-one settings to public schools because of the stunning increase in autistic children now able to attend.

Catherine Lord, a researcher at the University of Michigan and the primary author of a federal report on educational strategies for autistic children, said that many school districts are "still debating whether social development is even considered an educational objective," although social deficiencies are a hallmark of the disorder. Dr. Lord encourages parents to insist on having specific social skills spelled out in a child's individual education plan, mandated by federal law, and to call in a lawyer if necessary.

A few districts are using novel techniques, like the Montecito Union School, near the University of California, Santa Barbara, where graduate students from its Autism Research and Training Center help autistic children integrate at recess, an especially vulnerable time.

On a larger scale four districts in the New York region use a curriculum designed by Michelle Dunn, a pediatric neuropsychologist at Albert Einstein College of Medicine, which combines social skills groups for autistic children with schoolwide attention to the need for tolerance and trains school staff members to continue the curriculum on their own...

...Many educators who champion the behavioral techniques that made widespread mainstreaming possible are lowering their expectations. Bridget Taylor, a behavioral researcher who is the director of another school in Paramus, said she now tells parents of kindergartners ready for a regular classroom that "over time it's not necessarily a realistic placement."

Gary S. Mayerson, a New York lawyer who represents families seeking services for autistic children, says none of the options are ideal. Schools for learning disabilities rarely offer sufficient academic challenge. And private schools can choose which children to accept or to expel.

I don't have the time to put my comments into a coherent paragraph, but here are some thoughts:

1. When I read the description of these kid's school life it's hard not to think of Larry Summers, President of Harvard. Or the kids I knew at Caltech. Or a heck of a lot of electrical engineers. Of course those comments don't remind me of my childhood, heaven forefend.
   
   
2. Despite what I just wrote in #1, although nerdliness has a certain facile resemblance to autism, that doesn't mean they share the same pathophysiology. A person who's never had an interest in piano may play just as poorly as someone who's quite unable to learn. The difference is the first person may learn to play, even if they don't enjoy the process.
   
   
3. There do exist communities that will support persons with high IQs and very low EQs (emotional intelligence quotient); but you usually have to be over 18 to join up and capacity is limited. At the other extreme LD schools may not be able to handle the academic range of many of these kids; even worse, LD schools are often under heavy political assault with perpetual underfunding and high rates of teacher burnout.
   
   
4. It's hard to know what the best political solution is, but my hunch is that it's around redoing what an LD school is about and building a stronger political support structure for the abused LD world. Perhaps there's a way to harness the energy of the autism community; many of the parents of children with high IQ autism may be somewhat nerdly* but they are not themselves autistic; they function well enough to have both power and money. There might be a way to leverage those talents to refactor LD schools to serve a broader community.
   
   
5. Adult life with high functioning autism may be far more agreeable than high school life. Even for people who don't have autism or Asperger's, high school can be pretty difficult -- adult life has more niches and opportunities than adolescence provides. So the challenge for parents (like we need more challenges) is to somehow get the kids through high school in one piece. I think this is much harder in the US than elsewhere, I think Americans have produced a uniquely intense and socially demanding high shool environment.
   

*In our household "nerdly" is an attribute, not a defect.

Reading tutors: Upper Midwest Branch of the International Dyslexia Association

tutoring

I wrote Learning Circle asking for a list of tutors who use their teaching materials. Oddly enough they don't keep such a list. They suggested I visit an affiliate site of the International Dyslexia Association. Our Minnesota (midwest) affiliate does have a tutor referral service and I'll report on how that goes.

ADOS-G instrument for autism diagnosis

About the ADOS Exam

This web site is designed for researchers exchanging genetic materials for basic autism research. It includes a fairly technical but complete description of the currently favored method for "diagnosing" autism. I expect this test has a significant error rate.

The Autism Diagnostic Observation Schedule -Generic (ADOS-G) is a semi-structured assessment of communication, social interaction and play or imaginative use of materials for individuals suspected of having autism or other pervasive developmental disorders (PDD).

Summer reading group in Twin Cities area?

I'm looking to join or start a summer reading group in the Twin Cities (Minneapolis St. Paul) area. It would be for children ages 7-9 reading at the early first grade level with significant reading delay. I'm willing to hire a tutor.

If you know of such a group, or would like to join one, please email me at: jfaughnan@spamcop.net.

Saint Paul Public Schools Parent Portal

Campus Parent Portal Login

Our school district has launched a "parent portal". (The "portal" word annoys me for historical reasons, but it's reasonably descriptive). It's supposed to allow us to track our children's progress. It will be interest to see if there's any useful data beyond the lunch bill.

Phonetic alphabet chart -- from earobics

Cognitive Concepts - Resources

Free to download and print.

Why Clifford Phonics software is not educational, and Earobics is not entertaining

Amazon.com: Software: Clifford the Big Red Dog: Phonics

We have a pretty good collection of pre-school through grade one "educational software". Clifford Phonics is one of the better examples; that's why I'm picking on it here. We also own Earobics, a niche market package for phonemic awareness training. I've watched our children work with both, and it finally dawned on me why mass market "educational software" has only marginal educational value.

It's the market, stupid.

Take Clifford Phonics. Sure it teaches bits of phonics and reading, but it teaches it in an ad hoc way without any kind of consistent progression model. Worst of all in the incessant music. I watched my son using it during a rhyming word exercise. He's supposed to hear two words, then pick an object that rhymes with them. Great idea, except one of his challenges is isolating sounds and retaining them in short-term memory -- and all the sounds in Clifford Phonics are surrounded by a loud and incessant musical background. It's like trying to find a lost object while wearing psychedelic eyeglasses.

Nice pictures. Catchy music. Lousy education for a child that needs education. Fun for a (younger) child who has no disabilities, and no real need for the software either.

On the other hand, consider Earobics. Dull as dishwater. Weak production values. Boring. But it's structured, it isolates sounds, it has a good progression model.

The Clifford Phonics people aren't dumb. Their reading consultants probably know it's of marginal or no value to a child who really needs help. The Earobic folks aren't dumb either, but they know Earobics can't invest in fancy production values.

Why does this happen? That's the way markets work. Clifford Phonics, and its ilk, are products for the large and wealthy "edutainment" market. This is a market made up of fairly well off adults who need to entertain their children and like the non-violent aspects of this software and the reinforcement of respect for learning. Any educational component is relatively minor, but it's not important anyway. The vast majority of these kids will inherit their parents facility for learning and the software is of minimal value and minimal harm.

Earobics and its kin are markets for a the small and relatively poor education market.

The same phenomena operates, by the way, with advertiser driven health education web sites. People who really need health education in diabetes, cystic fibrosis, multiple sclerosis are a small minority, and their disease often means they don't have a lot of cash to attract advertisors. The market with money has different medical interests: weight loss, cosmetic surgery, exercise programs, life extension, back pain (everyone gets that) and self-diagnosis (usually of exotic disorders). The huge expansion in internet health sites in the late 90s was all driven by advertising dollars, and they focused on entertainment and production values -- not services and education.

Could edutainment software also be educational? In theory yes. They could make the music optional, they could enable parents to control what parts of the program kids could use, they could implement progression and monitoring but keep it optional. The problem is all these things increase costs and don't help one bit with the target market. That's not a formula for staying in business.

Could truly educational software develop better production values? I think there's more hope here. If the open source community starts getting into the game business, then the production frameworks used for entertainment software would be available for use in true educational software. A company could focus on its core competencies and narrow revenue streams, while parents and outsiders could donate the work to add production values on an open source base. It's not easy, but I don't see any market forces actively pushing against this option.

Otherwise, we'll be stuck with two unsatisfactory choices: entertaining software that's not truly educational, and educational software that's really boring.

Project Read -- from Bloomington Minnesota

Welcome to Project Read

Beth is the sister of our friend Jane. She teaches in Cleveland and focuses on children who can't read. She's fully up to date and reading research; in their systematic structured phonemic based program they teach the vast majority of their non-reading students to read -- with perhaps 1 in 50 resorting to a "word recognition" program. Her thought on schools that are still oriented to "whole language" was "get out now".

Talking to her is like finding water in the desert (kudos to Bob for insisting we bother her). The big surprise though was that the program favored by her school district comes from our back yard -- the place I go to work every day -- Bloomington Minnesota.

Here's some text from the Project Read web site (emphases mine w/ some corrections to their web typos):

Project Read©/Language Circle© is a research based mainstream language arts program for students who need a systematic learning experience with direct teaching of concepts and skills through multisensory techniques.

Project Read© has five curriculum strands:

• Phonology
• Linguistics
• Reading Comprehension – Report & Story Form
• Literature Connection
• Written Expression

... Project Read©/Language Circle© is designed to be delivered in the regular classroom or by special education, chapter one, and reading teachers who work with children or adolescents with language learning problems. Project Read© is recommended as an early intervention program for grades one through six, but is equally effective with adolescents and adults.

Project Read©/Language Circle© is cost effective. The cost per Project Read student is about 10% of the cost of funding a special education "pull out" program. Project Read's principles of systematic learning, direct concept teaching, and multisensory strategies reach the alternative instructional needs of students, thereby reducing the number of students referred for special services.

The neurophysiology of autism

The New York Times > Health > Focus Narrows in Search for Autism's Cause

The hypotheses:

1. Autism is a disorder of connections between functional components of the brain leading to an inability to integrate cerebral subunits.

2. Some of the subunits function well in isolation. This can lead to a strength of focus and an understanding of the detail.

3. Subunit isolation is associated with an excess of white matter and with inflammation. It is not known whether the inflammation is related to the fundamental cause or if it is a secondary response. It is also not known if the inflammation is helpful, harmful or irrelevant.

Faughnan Reading and Spelling database

I'm engaged in a small project to see if I can help integrate the diverse approaches that our son's school is taking to teaching him reading.

The research I read, and the opinions of leading reading researchers, currently favor an integrated, structured and coordinated approach to teaching reading that spans home, schools, special education, tutors and aides and regular classrooms. The current research paradigm is that the bulk of effort should focus on phonemic education; it's an open question as to what value "whole word"/"whole language"/word-recognition approaches add to this. Certainly our son's educators believe strongly that the whole language approach (Edmark, etc) brings some additional value. In the absense of research, and in the absence of individualized prescriptions (functional MRI, genome analysis, etc) expert opinion has to be credited.

I think it is true of every organization, not just a school, that coordination and integration is extremely challenging. In a school, where a class is a compromise between the needs of the one, the needs of the many, and funding this challenge takes on another meaning. Integration may not occur on a time scale that will be meaningful to our special needs reader.

We are, for better but more likely for worse, trying to take on some of that integration role. To that end I am compiling a word database (currently Microsoft Access 2000) that relates different word lists used by my son's varied teachers (Fry, Dolch, and top 100) to his spelling assignments and to his knowledge (read, spell). I'll probably add sample sentences too. Words will be associated with phonemic attributes (isPhonemic, etc).

The goal is to use this to track his progress, to try somehow to coordinate what he's being taught at school, and to generated some exercises to complement his homework. As a side-effect it also contains the above lists (based on the linked sources, at least one word appeared twice in a single source, suggesting a bug on data entry).

A published version of the access database is here. As I work on it I'll add reports, views, documentation etc. If anyone has a particular interest in this database, or would like other formats (FileMaker for Macintosh, Excel, tab delimited) or reports please email me at jfaughnan@spamcop.net.

Reality meets NCLB

Pantagraph.com - News - Official: No Child test contradicts disability act 01/30/05

Seven districts in LaSalle and Bureau counties were notified they did not make AYP, which eventually could hurt funding. Allen is now exploring the best approach to take in appealing because of the late notice and contradiction of approaches with the state law.

Each of the seven districts have been contacted by Ottawa High School about joining a federal lawsuit to change the way special education progress is measured. The Streator district board has not decided whether it will join that lawsuit

'Many of these students will never meet or exceed the standards,' said Allen. Among the problems that can't be addressed is that No Child requires students be tested at their age-appropriate level.

If they were able to perform at that level 'they wouldn't be in special education in the first place,' said Allen.

Of the 1,900 students in Streator grade school, 450 are in special education. Of those, 76 percent have severe reading or comprehension problems and cannot adequately be tested under No Child guidelines. State law requires in a special education student's plan that they be instructed at their functional level.

I see this as yet another example of Right wing's "problem of the weak". NCLB seems to have as its foundation the idea that every child can "perform" at a required level. On the face of it, that's absurd. It's akin to assuming a blind person with sufficient testing and remediation will learn to match color swatches.

On a practical level, however, NCLB has some advantages. It's easy for educators to push special education students into a twilight zone of vague and unment IEP goals. NCLB may become a major driver for the implementation of evidence-based reading programs that work for all comers -- including children with learning disabilities.

If we were a "better" species, I'd say that NCLB is stupid and pointless. It's degrading and hurtful to force a child to take a completely inappropriate and pointless exam. But humans are not a "better" species -- we are what we are. Given our many failings, maybe NCLB isn't hopelessly absurd. We may find a way to use it to our advantage -- even as we fight its absurdities.

Teaching Reading: Scientific American March 2002

how_to_teach_reading.pdf (application/pdf Object)

This important article was published in Scientific American in March of 2002. It's essential reading for any parent who's child is struggling to read. The SciAm web site charges for a copy of the article, but a PDF is distributed on Lexia Learning web site. Once you toss out some irrelevant pictures it's barely six pages long.

The article is a popular version of an analysis done in 2001/2002 for the American Psychological Society. It recapitulates the conclusions from the year 2000 NIH report, but it also delves into the politics of how reading is taught. In brief the scientific evidence for a phonics approach is quite strong, but progressive educators strongly believed in the 80s and 90s that a holistic creative approach with an ad hoc use of phonics was superior. A part of this belief seems to have been a deconstructionist approach to evidence; a belief that some things could not be tested or evaluated but rather had to be managed experientially.

Right wing conservatives were enraged by the "whole-word/whole-language" approach. Phonics, often associated with religious schooling, became their rallying cry. I don't know why they were angy, but, sadly for a leftie like me, the social conservatives were right about Phonics. Whole-language instruction is not the best way to teach reading for most children.

This is an article I'd like to distribute quite widely.

Lexia: software package for reading instruction w/ "phonemic awareness"

Lexia Library

Phonemic awareness is the PC term for phonics (ok, some say phonics follows "phonemic awareness", but I think practically speaking it's understood to mean "phonics"). Lexia is one of a myriad of pre-packaged commercial producst sold to schools to teach education. They're sold for a high price to school systems; typically a lower cost version is sold for family/home use.

Our schools system (Ramsey) is experimenting with Lexia, Earobics and the "Sunday system" (sp?). It looks like we'll get family exposure to Lexia; including buying a copy for our home. I'll provide a review here later. (They provide both Mac and Windows version. I assume the Mac version requires Classic. Buyers of the newest Macs have to install Classic separately.)

This web page provides some of the background and marketing material for the Lexia methodology. It looks like it's a good overall orientation to this class of reading instruction methodology.

Another page describes the program designers. There's a strong Orton-Gillingham (phonics) influence and a fairly strong Massachusett's General Hospital reading clinic influence. They seem to be on board the "No Child Left Behind Train", which is pretty good for a group from sin city (Boston). I wonder if they have friends in Kennedy's office. In any case, it looks like a promising team for a reading instruction package.

Measuring Progress - Tests and Measurements for the Parent, Teacher, Advocate and Attorney

Measuring Progress - Tests and Measurements for the Parent, Teacher, Advocate and Attorney by Pete and Pam Wright (Wrightslaw)

Wrightslaw publishes books on legal aspects of special education. This web page was linked to from the Lexia sight. It provides advice on how to measure progress. This is vital material to write into an IEP. I wonder if the IEP can also include a "Plan B" -- what do do if the benchmarks aren't being met.

Tutoring: the false solution

Propaganda won't fix No Child Left Behind

... And as The Post reported last week, Palm Beach County and other districts have not done well setting up free tutoring programs, which could be NCLB's most promising feature. Only 27 percent of eligible students in Palm Beach plan to enroll. Nationally, the figure is 10 percent, a dismally low rate for which parents share responsibility.

Ok, so how exactly does tutoring happen? At night when children struggling at school are totally exhausted, and when any ADHD meds are no longer effective? On weekends instead of other activities a child needs?

Tutoring has its place, but it's a poor alternative to providing appropriate educational interventions when children have supportive groups, have meds on board (if needed), and are in an optimal physical state to learn. Tutoring is very much second best to child specific appropriate educational interventions and child-appropriate goals.

Retention: repeating history

The New York Times > Education > Education Life > A Child Held Behind

Retention is popular again.

... The wisdom of retention, the policy of holding a child back to repeat the same grade, has long been debated. The battle -- between those who believe retention is damaging to children's psyches, social lives and attitudes about school, particularly in disadvantaged neighborhoods, and those who believe it is the best way to improve skills over the long haul -- has played out in waves over decades past. Periods in which retention grew popular are followed by times when it is not.

In the sciences, when we don't know what's right, we make testable predictions. Then we test them.

In the world of education, the habit is instead to repeat history. Retention one year, social advancement the next, make them disappear the next. Repeat.

Sigh. Equally bad is the approach to failing children. Just repeat again and again what didn't work before.

This is a truly discouraging article. The Chicago public school systems sounds like a real disaster. Children who repeat too often are dumped them into the "special education" program. Many of these kids should probably have been in a good special ed program to begin with, but what they get sounds like a desperate off ramp.

Meanwhile in Minnesota we're cutting state funding for special education, with no honest discussion of what funding should actually be.

There is some educational science out there. Not much, but it exists. Let's begin to use it. Let's not repeat failure ad nauseum.

Oh, and Chicago? Heck, do a trial of vouchers. It doesn't sound like they can get much worse. Just be sure to fund a bit of science as long as you're trying the vouchers.

Homework: two approaches

Yesterday I spent about four hours of mortal combat fighting through about 2/3 of my son's homework.

This morning we spent 15 peaceful minutes doing the rest.

What was the difference? Well, maybe it was mostly the variability of his neurotransmitters -- today they were in better shape. But maybe my latest innovation helped.

I divided his homework into subsections. Correct completion (meaning he accepts my guidance and allows corrections) of each subsection earned him 5 minutes of computer game time (Backyard Baseball -- no educational value. This was valuable because he probably gets about 50 minutes hour every two weeks of computer time and it's usually educational software). After each section he could decide whether to continue his homework or to take a break and use up his game credits.

Tracking the five minute sums was also a useful 'real world' arithmetic experience for him.

We'll see how this method holds up. It's similar to what I do for myself when I face a large and daunting project. I break it down to portions, and get the "reward" of completing each step. In my case the rewards are more abstract, in my son's case they are more concrete.

Pawlenty's educational plan -- killing the american dream

Pawlenty unveils education funding plan

This was buried away in the typically lousy coverage of Governor Pawlenty's plan for Minnesota education:

Other features of the 2005 Pawlenty education plan include allowing local school boards to raise taxes for such things as teacher performance pay, special education costs and overdue maintenance, and allowing school districts to raise more money through referendums.

In other words, back to local funding of education. Back to wealthy districts having good quality education, and poor districts making do with recycled texts and decaying classrooms. Back to making special education funding (note how it's carved out) something to be left to slowly disappear.

A powerful move away from the american dream, a dream of a decent educational opportunity for every american. A move to giving more to those who have, and less to those who lack.

Of all the sins of America, the one that most bothers me is local funding of public education. Nothing is a better guarantee of enduring poverty.

PACER Minnesota: workshops 2005

Workshops

PACER has a lot of workshops in Feb, March and April. I don't remember such a large collection on this web page, they're covering conferences from other local groups as well. The layout doesn't organize them by date, but rather by sponsor or audience and then by date.

Scholastic.com | Read 180 - reading intervention program

Scholastic.com | Read 180

This is the high-tech "cadillac" entry in the Seminole county trials. The author divides the intervention into a "90 minute model"; of which 60 minutes is spent in small groups with the software, 20 minutes whole class and 10 minute summation.

I like the idea of the extensive small group sessions. Otherwise it would be interesting to know how well the software matches up with Sally Shaywitz's writings.

Florida school district tries to sort out commercial reading intervention programs

OrlandoSentinel.com: News - Best path sought for teens who can't read

This fits my emerging impression -- there's a large knowledge gap around interventions for children who have difficulty reading. Every classroom has its own idiosyncratic practices. It reminds me of medicine in 1890. Sadly, I doubt the Seminole County study will have enough funding or expertise to provide high quality answers. These are terribly difficult studies to do well.

These teens probably needed effective interventions 10 years ago, but I suppose better late than never. Credit to Stacy Weiss for this link.

Note this activity appears to have been motivated by the sanctions in the NCLB act. Points to that legislation, it is not entirely malign. Emphases mine.

By Dave Weber | Sentinel Staff Writer
Posted January 1, 2005

SANFORD -- Thousands of high-school students in Florida can't read, and educators are scrambling to help them catch up by using a hodgepodge of methods that vary from district to district, school to school and even classroom to classroom.

No one knows exactly what works.

But Seminole County school officials hope to find out. This month, they will begin a three-year classroom research project, partially funded by the state, that they hope will tell them where to put their effort and their money.

... Working with Dr. Laura Hassler, a reading researcher at Florida State University, Seminole officials hope to develop a reading program that can be duplicated in other districts. Seminole will spend about $2 million on the experiment, including hiring 14 new teachers.

... By next fall, about 2,000 of Seminole's poor readers, mostly freshmen and sophomores, will be split among three approaches to reading instruction, with educators watching intently to see which produce the best results.

... Classes will be limited to 20 students, so teachers can give them more attention. Students will spend 90 minutes each day in reading class.

.... The reading approaches include two costly commercial strategies and another that pulls together several methods at less expense.

Read 180 by the Scholastic company relies heavily on students using computers, and is the most expensive at $439,000. Teachers use a script of carefully drawn activities in SRA Corrective Reading by McGraw Hill, which will cost the district about $130,000.

A third approach, called Strategically Oriented Intensive Reading Instruction, was developed by Evan Lefsky, a reading specialist for the state, and relies on teachers using a certain set of instructional activities. It has a price tag of $84,400.

The district also will train teachers of high-school language arts, science and social studies to gear their classes toward poor readers while at the same time helping students to become better readers.

.... For years the schools passed students along, despite their inability to read. Education reforms including the FCAT, mandatory retention for third-graders who can't read and the state's tough school grading system are sharply reducing social promotions.

... School officials are panicking because while poor FCAT reading scores for the past few years were hurting individual students, now they are giving entire schools bad names.

... now the low reading scores of struggling students affect the letter grade that the state hands out to schools each spring. In 2004, Lake Brantley High got a C and Seminole High earned a D under a provision in the state grading system that drops schools an entire letter if poor performers don't improve two years in a row.

Vogel and superintendents around the state worry that dozens of high schools could be hit with the penalty in June, when new grades come out, because poor readers will drag them down.

The journalist implies we know what to do in the elementary schools. That's certainly not true in my school district. I'll have to learn more about the programs they're trying.

The greatest fallacy in special education: using IQ vs. focal disability to allocate educational interventions

Learning Disabilities OnLine: LD In-Depth: NCLD Summit 1999

From a 1999 lecture by the director of an NIH agency:

Distinguishing between disabled readers with an IQ-reading achievement discrepancy and those without a discrepancy reflects an invalid practice at the beginning stages of reading. Specifically, children with and without a discrepancy do not differ in the information processing skills (phonological and orthographic coding) that are necessary for the accurate and rapid reading of single words. Likewise, genetic and neurophysiological (functional MRI) studies have not indicated differential etiologies for reading disabled children with and without discrepancies. Converging data from several NICHD sites also indicates that the presence and magnitude of IQ-reading achievement discrepancies are not related significantly to a child's response to intervention.

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One of the most hideous (I use the word deliberately) policy errors in public education is the baseless conceit that resources should not distributed on the basis of a disability, but rather focally on the discrepancy between "global IQ" and "measured outcome". One presumes this is based on a belief that:

1. Low IQ makes intervention futile.
2. There is something special about a focal deficit that makes this the preferrred tartget of intervention.
3. Children with low IQ results are best locked in a dark room, preferably without a key.

This is a perverse belief; the more one examines it the more it is seen a particularly repulsive combination of belief contradicted by evidence, and a condemnation by IQ test. And yet, it remains the fundamental basis of assigning resources for educational intervention in most school systems.

NICHD (NIH) director lecture on helping children to read (1999)

Learning Disabilities OnLine: LD In-Depth: NCLD Summit 1999

A 1999 lecture by Duane Alexander Director, National Institute of Child Health and Human Development, National Institutes of Health:

Learning to read is critical to a child's (and an adult's) well-being. The child and adult who cannot read at a comfortable level experience significant difficulties mastering many types of academic content, are at substantial risk for failure in school, and are frequently unable to reach their potential in the vocational and occupational arena....

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The page has a like to a RealAudio file and the text of the speech. The date and location of the speech does not appear on the page content, but it can be found in the browser title (sigh).

We're finding a large gap between reading researchers and school knowledge. It makes the gap between clinical research and clinical practice seem modest by comparison. I have to guess there's just not enough money in education to support effective dissemination of knowledge.

BTW, this appears to have been a limited late 90s initiative of this branch of the NIH. The current NICHD web site has no material on reading education or the science of teaching reading.

National Center for Learning Disabilities: A private foundation

National Center for Learning Disabilities: Resources on learning disabilities

They have some good foundation sponsors (Ford, Emily Hall, ExxonMobil. Seem to sponsor some conferences. Worth exploring further.