Autism society of Minnesota: camp experiences

We received this notice from the ASM listserv. I've edited the note slightly. Summer camp attendance is a prerequisite for the winter program.

The Autism Society of Minnesota Camp Hand in Hand Winter weekender

... A Camp Hand in Hand Winter Retreat for Youth 9 – 18 on the Autism Spectrum
A few spots are still left! Register by Monday, December 17!

January 19 – 21, 2008
Camp Friendship
Annandale, MN

Take part in a wide variety of fun, structured indoor and outdoor seasonal activities during this 3-day winter holiday during Martin Luther King, Jr. weekend. Campers will stay at the beautiful 115-acre Camp Friendship located on the shores of Clearwater Lake near Annandale, MN. Facilities include modern cabins and a lodge with a canteen and game room. Specially trained Camp Friendship staff will lead activities.

Campers will be supported by AuSM-trained staff at a 2:1 camper to staff ratio. A licensed and experienced nurse will provide 24-hour medical care.

Activities include:

Cross country skiing
Snowshoeing
Ice fishing
Sledding
Broomball
Arts and crafts
Music
Gym games
Climbing wall

This camp is appropriate for children who attend Camp Hand in Hand during
the summer. If you are unsure if it is right for your child, please visit
our website and read the descriptions of Camp Hand in Hand and Camp
Discovery. We are also happy to answer your questions.

Registration
Camp fee is $330.00

A $100.00 non-refundable deposit is due with registration. Final payment is due January 10, 2008. Registration deadline is December 17, 2007. Space is
limited. Camper spots will be filled on a first come, first served basis. You must be a member of AuSM to register.

The MN Special Hockey season II is underway

The South Stingers are looking good.

This is our second full season. We're still open for new players -- all ages, genders and abilities.

The only entry requirement is a cognitive disability including ADHD (more to the severe side), autism, Asperger's, Down's and more.

MN Special Hockey has two other teams, one in Woodbury and another in Blaine. The Stingers are in Edina.

Try it.

Reading about autism and ADHD - our personal favorites

More than a year ago I started an "introduction to autism" post. I'll return to it some day, but I'd like to say something today about what we've read that, in retrospect, was most useful.

First, an important caveat. My wife and I are physicians. We don't bother with popular books with a medical emphasis because we know that stuff. So our reading is biased towards behavioral and legal topics.

We've read a lot over the years. You can click on this snapshot of our library to get a quick review of the books we've kept.

Not all the books are equally valuable however, and not all the most important reading has been in books.

There are two items that stand out. The first is a book, the second a throw away newspaper article.

The most important is Greene, The Explosive Child. This is from my Amazon review:

If I had to choose the most important book I've ever read, the one that most influenced my life, the one book I could not afford to have missed, it would be this book.

We read it about seven years ago. My marginalia sprawled from the pages to the back covers, replete with emphatic circles, arrows and double underlines...

...There are some quibbles I have. Time outs, for example, work well if they're used as calming interventions that last from seconds to a minute (even though we call them "punishments" since that's what our son prefers, they are only to allow him time to calm himself).

The fundamentals, are as sound as can be. I most appreciate the modesty I remember. Greenes is frank that not every child has a happy ending -- no matter the interventions. We're talking a serious struggle here...

... Even if you have a merely difficult child, or straightforward ADHD, or mere high IQ autism, or simple Asperger's, you should read this book.

If you have an explosive child, you must read this book...

The other one is very short. Yes, a NYT article about using 'extinction' in animal training.

I think of "extinction" when working with children as an advanced technique. It must be done in such a way that it does not induce anxiety, and the child has to be able to calm themselves when others withdraw. It doesn't work if the child will pursue aggressively, or react with destructive or dangerous behaviors.

It is, however, powerful.

Those are the top two. I also particularly remember Welcome To Alaska, one or more of Temple Grandin's books on life with high IQ autism, and Benjamin Pollis "Only a Mother Could Love Him" - an insider's guide to life as an explosive child with severe ADHD.

The rest of our reading is more routine. Any number of references on Personal Care Attendants or disability law will suffice.

Update 5/3/10: For the adolescent phase of special needs life, I like a book written about selling, sales, and persuasion: 3 Steps to Yes by Gene Bedell.

Free-reading: an open soure reading program

Oddly enough, I came across this via a Slashdot post:

Main Page - Free-reading: "Free-Reading is an “open source” instructional program that helps teachers teach early reading. Because it's open source, it represents the collective wisdom of a wide community of teachers and researchers. It's designed to contain a scope and sequence of activities that can support and supplement a typical “core” or “basal” program."

A while back I'd thought of developing a library of short stories that could be used in reading programs; including more boy oriented stories. They're doing something like this.

There's some content in place and it has a real advisory board:

Catherine Snow

Henry Lee Shattuck Professor of Education

Harvard Graduate School of Education

Michael Kamil

Consulting Professor of Education; Psychological Studies in Education; Learning, Design, and Technology

Stanford University School of Education

Barbara Taylor

Guy Bond Chair in Reading

University of Minnesota

Director of the Minnesota Center for Reading Research

Barbara Kapinus

Senior Policy Analyst

National Education Association

Fred Carrigg

Director of Humanities K-12, Middletown Public Schools

Former Special Assistant to the Commissioner for Literacy, NJDOE (2002-2007)

I think most of the contributors are teachers. They claim to have an evidence-based philosophy, that would mean a much stronger phonics orientation than is common in Minnesota.

Outsourcing for special needs services

The NTY has a review of outsourcing service tasks to India:

Adrianne Yamaki, a 32-year-old management consultant in New York, travels constantly and logs 80-hour workweeks. So to eke out more time for herself, she routinely farms out the administrative chores of her life — making travel arrangements, hair appointments and restaurant reservations and buying theater tickets — to a personal assistant service, in India.

I'd wondered when these services would catch on. I'd particularly like to outsource entering my expenses at work. It takes me four hours to enter a batch of expenses in our ridiculous corporate accounting system. If I were to outsource the chore I could work three hours, take an hour off, and everyone would win.

More seriously, many persons with special needs can function quite well in the world -- with some supervision. Every so often though things get tougher, and a vulnerable person can hit the wall.

That's when it would be nice to have a personal assistant on call 24x7. Pick up the video/camera/GPS phone, and the remote assistant would come on. Their computer screen would display the video image, the geographic location and all relevant data at hand.

I've wondered about starting that business myself. The software alone would be interesting.

Twin Cities: Groves Academy lecture on teaching reading to special needs children

Groves Academy is a fabulously expensive private school in the twin cities area for children with "learning, attention and language disorders". That list obviously omits autism spectrum disorders; my understanding is that they only take children with pretty good behavioral abilities and a 25 percentile or better IQ.

Their hosting a workshop on teaching reading to the "struggling reader". We'll find a way to be there:

John Alexander, Head of School at Groves Academy, will discuss what the latest research reveals about the teaching of reading, particularly with respect to the struggling reader. He will also discuss his participation on the state reading task force and the movement to change the core competencies of teachers who teach reading.

Tuesday, October 23, 2007, 7:00 pm - 8:30 pm at Groves Academy.

This workshop is open to the public at no charge. Continuing education credits will be provided. Please register in advance: call 952-920-6377 or email luffeya@grovesacademy.org

Fast ForWord reading software

I'm not a fan of computer software as a tool for teaching my elder son. We've tried a lot of different packages over the years, but I think the cognitive burden of interacting with the software steals cycles from the key tasks. He does best when engaged with a teacher or therapist who genuinely likes him (he's very good at telling who likes him). He does less well learning with his parents, which I think is not unusual for any child.

On the other hand, we're stuck.

He's not making progress on his reading. I don't expect him to start reading Kant anytime soon, but I'd like to get to 4th grade level. At this rate we won't make it before adolescence hits.

So I'm ready to try something different. I like his school, but I think we've run through every trick in their books. We contacted a friend who occupies a chair in developmental pediatrics at some place in Boston, and he connected us up with a physician researcher with a particular interest in reading. She suggested a look at "Fast ForWord®". No, it's not "Fast ForWard". The very name is an exercise in phonetic reading. I misread it a dozen times before I parsed the letters.

We looked over the videos and I was not exactly thrilled. "Construction Pig" and the other cartoon characters are just right for a six year old who's having trouble keeping up with first grade, but they're pretty misplaced for a 10 yo who really wants to see Count Dooku being decapitated (no, he's not allowed to watch Star Wars II and III, but I think they show the damned movies at his after school program).

Unfortunately there's not much hope for improvement on that front -- my very generous de facto consultant talked with the scientist who created the program and she basically said it's "construction pig" or nothing -- until a student graduates to a high school level.

In other words, the social context for the software is matched to the reading level. The target group is obviously children who are falling behind (no child left behind), but who have not left the train completely. In other words, it's not designed for special needs children, it's designed for mainstream kids whose age level won't be too discordant from their reading level.

Sigh.

In one of my real lives I'm a software geek, and in another real life I'm a business guy. I think given a combination of grant money and business funding I could peel off the language engine from the presentation layer and, instead of having a moose spray paint food I could have a generic golfer (ok, he'd be asian-african but wouldn't look too much like anyone you know) whack the ball -- the better the reading, the longer the drive.

Unfortunately I'm still otherwise employed. Did I mention we're getting desperate?

We'll give a try. Maybe a promise to allow a viewing of Star Wars II will offset the demoralizing cartoons. The web site lists several providers in the Saint Paul area in 5-6 businesses:

Janet Jacobs, CCC-SLP
Associated Speech & Language Specialists

Sarah C Hanson M.A., CCC-SLP
Associated Speech and Language Specialists

Ms.Susan Imhoff, MA, CCC-SLP
Children's Hospitals and Clinics-Roseville

Diane Sineps
Partners for Effective Communication

Jessica Chamberlain MA CCC SLP
Family Achievement Center, Inc.

Shiloh Ricker MS,CCC-SLP & Jennifer Jensen MA,CCC-SLP
Family Achievement Center, Inc.

Jennifer Jensen MA. CCC SLP

I have heard about the Children's Hospital program but I think the waiting list is pretty severe. Any success will require a lot of chemistry, flexibility and inventiveness, so we'll do some visits to learn more.

I'll post on what we learn.

Update 12/18/08: We didn't pursue this one, but I've gotten a positive review from a trusted parent source. So we're looking again.

A Shade Of Grey: a geeky autism blog

A Shade Of Grey is Ian Parker's blog about his experiences as the parent of a child who has autism. I'll add it to my bloglist.

PCA: Beware the agency's recertification process

I'm hoping to persuade my wife to write up the relevant material, but I wanted to get something out quickly. It if can save one person some hassle ...

Earlier I wrote about: The Personal Care Attendant: things I wish I'd known. We've learned some other things which I'm going to summarize quickly here:

1. The agencies that manage PCA services for the state have to recertify yearly. It turns out some agencies are very bad at doing this. If they fail to recertify on time the best thing that happens is you lose your services instantly -- without warning. The worst thing that happens is you find out 6 months later that the agency didn't recertify. In this case the family may owe the state the money. Lesson: Assume the worst, track the recertification process.
2. The state of Minnesota provides free legal services for disability related work. Isn't that nice to know? This is very valuable in the case of #1.
   

We'll see how this goes. Fortunately we can work with lawyers and we have an excellent state representative, who's office we will engage if we need to.

Years ago I considered retaining a special needs attorney simply as an expert consultant. The attorney I interviewed was excellent, but quite expensive. I suspect I probably should have spent the money, but I'm looking forward to learning what the state funded disability law services are like.

The curse of special needs reading: BORING books

Recently we ordered a set of the readers our 5th grader's teacher uses. We figured we could structure some work around them that would extend what the teacher has time to do, but be consistent with his plans.

There's only one problem. The material is boring. Dull. Tedious.

I assume it's what's left when anything that might offend anyone has been removed, but I was sedated just reviewing the titles. I dread trying to get my son to read this stuff.

Admittedly he doesn't have the widest range of interests, but there's enough. Exploration, construction, coast guard, rescue, natural disasters, mountain climbing, surgery, animal adventures, airplanes, submarines, aircraft carriers, bicycles, football, baseball, hockey, George Washington, bowling, archery, horses ...

You know, I bet it might even be possible to craft something that would be both non-sedating and non-threatening.

I get a bit batty with this sort of thing. It's hard enough to teach reading when it's an exhausting exercise for the reader, but adding boredom to the mix is fatal. Evidently exciting material doesn't sell, but that doesn't mean I have to like the situation.

Genetics of autism: inheritance from an asymptomatic mother with a spontaneous mutation

This was published in Scientific American news in July, but I've only just come across it. The authors are attempting to describe the phenomenon of familial autism in which neither parent appears to be autistic nor to have a family history of autism ... (emphases mine)

New Theory about Autism Roots: Scientific American 7/24/07

... Wigler's rethinking of autism's cause stems from an exhaustive analysis of risk based on a database of families with more than one autistic child. (The Autism Genetic Resource Exchange, or AGRE, manages the database.) The team determined that most cases of autism arise from novel, spontaneous mutations passed down from one or both parents, resulting in large gaps in a person's genome often encompassing several genes, which are then disrupted or inactivated. (This loss of genetic code—known as copy number variation—results in an offspring receiving only one of the standard two copies of a gene, which could cause an insufficient amount of protein to be produced by those genes.) In most instances, this mutation will result in an autistic child. However, in some cases—more likely in girls than boys—the recipient of this mutation will not produce any symptoms.

"When that child matures and becomes a parent, they have a 50 percent chance of transmitting … [their mutation] … to a child that might not be as lucky as they were, especially if … [its] … a boy," Wigler says. "So, they will be transmitting this with close to a 50 percent frequency—and that is the source of the high-risk families."

Wigler says that the team will continue to update its model as new figures are added to the AGRE database and try to gain new insight into the mechanism that gives girls greater resistance than boys. "To understand that [disparity] at a molecular or genetic level would be very important, because you could theoretically treat kids … you could detect something early and intervene," Wigler says. "I view it as the most important thing to understand."

Maja Bucan, a professor of genetics at the University of Pennsylvania, says that the new autism model is a creative way to interpret the familial data. "It's important to come up with new theories and then just test them once we have more data," she explains. "I don't think we have enough data [yet] to say whether this theory is right or wrong."

According to Wigler, the new model "certainly changes the way you think about autism. The paradigm shift is … something can be genetic without being heritable. The field has ignored the contribution of spontaneous mutation for a whole range of things that matter a lot to society," which, he adds, includes schizophrenia and morbid childhood obesity.

This is in line, as the final comment suggests, with a new belief that many common disorders have a genetic root but not a family history; they arise from spontaneous mutations. The key in this model is that women who are afflicted with the mutation may not present with autism; women have redundant systems that protect against expressing the disorder (phenotype). Their male children, however, can inherit the genes and, lacking the protection females have, develop the disorder.

It this is shown to be true it will have implications for our understanding of schizophrenia, autism, and the evolution of the human brain and mind.

Special needs: moving to 5th grade

I haven't had many posts in this blog recently, but, of course, if you're using a blog reader that shouldn't matter. If you're just checking this web page periodically ... well, you should be using a blog reader.

One reason I don't post so much is that our personal situation(s) have been relatively stable. I'll have something more to say about personal care assistant (PCA) funding in Minnesota soon, but for now I'll comment on the particular problems of late primary education and special needs.

A low IQ special needs child is coming to the end of the "mainstream" road by late primary school. That's when some children are reading at the college level while the special needs child is struggling with very basic literacy. Now we're shifting to preparing for non-mainstream education, and continuing to push for as much literacy as possible. We have a minor interest in arithmetic, but really functional reading is our only academic goal.

There's very little science to help us. Reading research focuses on children with normal abilities or focal reading disorders. Complex multi-factorial reading disorders are well beyond the bounds of what reading science can help us with. If a child has reasonable word recognition skills, but awful word attack skills, do we push on their weakness, build on their strengths, or balance both? Many people may think they know, but none have any data. For now we have an opportunistic balanced approach, based largely on what our child can be incented to try. One big factor is that phonics reading materials assume the interests of a 1-2 year old child. Our child's interests are much closer to those of his chronological age group. There's almost nothing written for the interests of a 10-12 year old and the reading ability of a 6-7 yo.

Lately our 5th grade teacher has been sending home assignments using "High Noon Reading Fluency" exercises, level A (1st grade theoretically, though the A to D reading excerpts all seem rather similarly difficult to me). This is helpful, because we assume he can only spend a very limited amount of time with our child. So this gives us something we can build on at home and on the weekend - especially if we can do the work and evaluation, but have the teacher deliver the result and exercises. Our child is very keen on pleasing teachers, so we do best to leverage that. We've ordered a complete set from RLAC; I chose them because I liked the sample PDF they provided, the quality of their website descriptions, and the free shipping.

I'll post on how it goes. We have, by the way, used a variety of reading software packages over the years, but our child does much better with physical paper. I think the cognitive burden of the user interactions is much lower with paper, so he can bring everything he has to the reading task. Electronic interactions are too distracting, and they demand cognitive cycles for the electronic interaction alone. He needs everything he has.

There's another interesting aspect to this search. It turns out that the Google Search "high noon reading fluency" is the "key" to a range of interesting online educational resources for special needs and neurotypical children. Try it and explore ...

[1] Google Reader and Bloglines are my favorites, the reader built into IE 7 is obscure and limited, but simple once you figure it out, Safari has a fine reader, Firefox's reader is so-so.

Food additives and hyperactivity?

Ouch! What a pain this will be if it's true.

Some Food Additives Raise Hyperactivity, Study Finds - New York Times

... Common food additives and colorings can increase hyperactive behavior in a broad range of children, a study being released today found. It was the first time researchers conclusively and scientifically confirmed a link that had long been suspected by many parents. Numerous support groups for attention deficit hyperactivity disorder have for years recommended removing such ingredients from diets, although experts have continued to debate the evidence. But the new, carefully controlled study shows that some artificial additives increase hyperactivity and decrease attention span in a wide range of children, not just those for whom overactivity has been diagnosed as a learning problem....

I'll need to read the original article to decide how real this is, how large the alleged effect was, etc. It was a true randomized and ostensibly blinded study, so it's definitely interesting. I'd like to see some correlation from animal studies and, above all, we need the results to be replicated in other studies. I've seen some very strong results disappear on re-examination, and this is is a big enough deal that we need to know more.

It would be cool if we learn something new about how diet alters behavior, but I'm going to be pretty cautious for now. It'll be a few years before the essential secondary studies are complete. If I were to bet, I'd bet that the results won't hold up -- but I wouldn't bet much!

Tim Page: a life with Asperger's

Tim Page, a critic and writer, tells his personal story of 52 years with Asperger's / high functioning autism:

Personal History: Parallel Play: Reporting & Essays: The New Yorker

.... I received a grade of “Unsatisfactory” in Social Development from the Mansfield Public Schools that year. I did not work to the best of my ability, did not show neatness and care in assignments, did not coöperate with the group, and did not exercise self-control. About the only positive assessment was that I worked well independently. Of course: then as now, it was all that I could do.

In the years since the phrase became a cliché, I have received any number of compliments for my supposed ability to “think outside the box.” Actually, it has been a struggle for me to perceive just what these “boxes” were—why they were there, why other people regarded them as important, where their borderlines might be, how to live safely within and without them. My efforts have been only partly successful: after fifty-two years, I am left with the melancholy sensation that my life has been spent in a perpetual state of parallel play, alongside, but distinctly apart from, the rest of humanity...

Mr. Pages's pre-college years were particularly difficult. He reiterates the truism that life improves for most atypicals when high school ends -- the adult world has far more latitude than the world of early education. He believes were he a child today that things would have been much easier -- I think he's right. It's not that we have great "treatments" for Asperger's or high-functioning autism, but I do think we have much better ways to accomodate and manage atypical minds.

I don't share Mr. Page's faith in a clear dividing line between "high-functioning autism" and "Asperger's". Were he to start over today he could be as easily given one label as the other. I think his story will be of particular interest to teachers, parents, friends and caregivers of persons with high IQ autism and/or Asperger's. His ongoing functional improvement, even in the absence of specific interventions, is noteworthy.

ODD? Conduct disorder? Antisocial disorder? Not always a disadvantage

Craig Venter is a famously difficult man. Vain. Egocentric. Argumentative. Difficult to work with. Compelled to defy convention.

He's also fabulously rich and a certified historic figure. He has recently sequenced his own genome and published the results. They are of interest to parents of difficult children ...

J. Craig Venter - In the Genome Race, the Sequel Is Personal - New York Times

...Dr. Venter reports that he has variants that increase his risk of alcoholism, coronary artery disease, obesity, Alzheimer’s disease, antisocial behavior and conduct disorder...

... Next month, Dr. Venter will publish an autobiography, “A Life Decoded.” The book describes the twists and turns that led him down the unlikely path into scientific research. “Rebellious and disobedient,” as he describes himself, he dedicated his teenage years to the pursuit of young women and the California surf, to the detriment of his academic career.

He was drafted at the time of the Vietnam war and enlisted in the Navy. Because of a high I.Q. score, he was given a choice of any Navy career, from nuclear engineering to electronics. He chose the hospital corps school, because it was the only course that did not require any further enlistment. Only too late did he discover the reason. Corpsmen in Vietnam did not usually survive long enough to re-enlist — the half-life of medics in the field was six weeks, he writes.

Learning how to manipulate the Navy bureaucracy, he got himself assigned to the Navy hospital in Da Nang, where chances of survival were better. But the work was harrowing. He witnessed several hundred soldiers die on his operating table, mostly when he was massaging their heart or trying to breathe life into them.

“I learned more than any 20-year-old should ever have to about triage, about sorting those you can salvage from those you cannot do anything for except ease their pain as they died,” Dr. Venter writes in the autobiography.

He escaped from Vietnam with his life and an interest in medical research. With his lack of academic skills, this was a hard field for him to break into, but by 1975 he had a Ph.D. By the late 1980s, he was starting to make his mark as one of the few scientists who could get useful results out of the first DNA sequencing machines that were then becoming available.

He was the first to sequence the genome of a bacterium, Hemophilus influenzae, even though his grant application was turned down by the National Institutes of Health on the advice of experts who said his method would not work. With the human genome, an even greater prize, the pace of competition was intense, especially when his approach turned out to be more efficient than the one his rivals had chosen.

In the book, Dr. Venter says that detractors badmouthed his work, pressured other scientists not to cooperate with him and tried strenuously to block publication of his report, of which they had earlier maneuvered to be made co-authors.

“Like most human endeavors, science is driven in no small part by envy,” he writes.

Dr. Venter has never fully lost his youthful disrespect for authority and establishments. His investment in himself — choosing his own genome to sequence, naming his laboratory the J. Craig Venter Institute — may come across as vainglorious, but it can also be seen as a signal of survival, defying the establishments he believes have sought to crush him. However nettlesome he may seem to some of his colleagues, he has the charm and the personal skills to have recruited many highly able researchers to his teams.

Another reason for his success has been his skill at raising private finances to achieve research goals after being denied support from the National Institutes of Health. That a scientist of his ability has been forced to work outside the N.I.H.’s peer-review system puts peer review in a strange light. If his diploid human genome should become a standard, the success is one that he will have earned by perseverance and defiance of long odds.

My last post was about an astronaut with asperger's syndrome. Now I'm writing about an extremely "successful" man who, but for his IQ, would perhaps have been diagnosed with ADHD/ODD as a child.

One of the more interesting results of understanding the genes for behavior will be changing how we perceive cognitive and behavioral traits. Sometimes a bit of ODD can have advantages (an IQ of 150 probably helps though).

An astronaut with Asperger's

When I first read of Lisa Nowak's infamous cross-country drive, I was fairly confident that she was having a psychotic episode. I did not suspect she also had Asperger's syndrome:

Former astronaut Lisa Nowak will claim temporary insanity - Los Angeles Times

Former astronaut Lisa Nowak plans to claim she was temporarily insane when she attacked Colleen Shipman on Feb. 5 at the Orlando International Airport.

Her attorney, Donald Lykkebak, filed a notice of this type of defense late Monday with the Orange County Clerk of Courts.

Some of the reasons listed in the notice include "a single episode" of major depressive disorder, severe insomnia and obsessive-compulsive disorder. The plea also notes Nowak's marriage problems and inability to confide in family members or others, as well as her large weigh loss.

It also diagnoses Nowak with Asperger's Disorder, a condition with autistic-like symptoms that causes problems with social skills and can lead to eccentric behavior...

There are two aspects of this story if interest to our community. One is how the law should handle diminished capacity. I personally favor a tailored approach based on the future likelihood of harm to self and others, but that's not what I'll discuss here. The other aspect of interest is her history, and I believe the diagnosis is likely correct, of Asperger's syndrome.

It's a cliche that a large portion of electrical engineers could have met the diagnostic criteria for Asperger's as children, and could probably meet it today. Lisa is an aerospace/astronautical engineer. It's not electrical engineering, but it's close enough. I would love to see a real study that tested how true the cliche is. The first man on the moon, Neil Armstrong, was also an aeronautical engineer and famously shy and publicity adverse. I wonder how he'd test out.

My personal sense is that individuals with Aperger's, and with high-IQ autism (the definition of both is famously inexact, they likely overlap) can do extremely well in some settings. They do, like all of us*, retain weaknesses they must continue to compensate for. I don't know how much of a role Lisa's Aperger's played in her tragedy, but I suspect the combination of obsessive-compulsive disorder, Asperger's and depression was just the "right" wrong mix. As psychiatry continues its sluggish and difficult transformation into a scientific trade, there will be more of an emphasis on how persons with austism, Asperger's, attention-deficit disorder and obsessive-compulsive disorder can leverage their strengths and offset their disabilities, and how decompensation can be recognized and individually managed.

Good luck Lisa. Oh, and astronauts -- if someone tries to make Asperger's a disqualifying diagnosis, insist they test Neil first.

* When the gene testing does emerge, it will be interesting to learn how many of us have the predilections.

Salon's obscure forum for special needs parents

My wife found this by chance and I had a hard time rediscovering it. Buried in the creaky* Table Talk discussion forums of Salon (not on the WELL, which Salon also hosts), in the Family Life discussion area, is the "x-treme parenting discussion":

The joys and challenges of parenting a child "on the far end of normal." Physical and developmental delays and disabilities, learning and attention problems, emotional, behavioral, and chronic health issues. Diagnosis, treatment, and daily life. No topic is too large or too small, and all are welcome.

It started with a single post in 2005 and the discussion's been running for about 20 years a few thousand posts. It's a bit of a mystery that this thread has lasted so long...

--
* How creaky? The URLs embed the user login identifier - so creating this post took some careful editing! In one case I had to retain the identifier to allow the link to work. Medieval, really.

My comment on a Slashdot thread: Failing Our Geniuses

I suspect we don't have real data on the outcome for "geniuses", much less for high IQ children. In any case, this was my comment on a typically erratic Slashdot thread discussing a Time magazine article on "gifted" children:

Slashdot | Failing Our Geniuses

We fund special education for several reasons, one of which is to minimize adult economic dependency and disability. That is a clear social good. A secondary motivation is compassion for people who've been very significantly disadvantaged. This funding includes high IQ persons with disabilities such as Asperger's, autism, etc.

I'm not aware of any data showing that a significant number of "geniuses" (a fuzzy concept, I've met only a few true geniuses, and that group included Richard Feynman) are economically dependent. I'm even more skeptical that a significant number of people with IQs over 140, in the absence of qualifying conditions (ADD, autism, etc) are disadvantaged. Let's not use MENSA as a guide, I don't think that's a representative body.

I would even wager that we could eliminate 25% of the school day for high IQ students and have minimal impact on any kind of outcomes. I happen to know a fair number of high IQ adults, and I have not seen any correlation between the "quality" of their early education and their outcomes. The greater impact, by far, is the wealth of their parents ts -- and that primarily manifests not as economic rather than absolute relative outcomes. For example: family physician vs. partner in prestigious law firm.

By way of context, of two special needs children I know well, one is also "gifted". For that matter my wife and I were "gifted" too, and we were satisfied with our rather plain Canadian educational experience.

The Personal Care Attendant: things I wish I'd known

The state of Minnesota has paid for a personal care attendant for our son for the past 2-3 years. In our case the service has been managed by an agency I'll call "The Agency". We've had a couple of young men, one of whom lasted a few months. We've gone through 3-4 young women, all students, with a bit more success. Along the way we've learned a few lessons worth passing. I'll try to summarize them here:

1. There are books written about how to acquire and maintain a PCA, such as The Personal Care Attendant Guide: The Art of Finding, Keeping, or Being One. Katie Rodriguez Banister. Who knew? The Amazon page for this book links to others. We're going to order a couple.
2. The PCA system was designed for the care of persons with severe cognitive and/or physical disabilities. The system is a poor match for our needs -- a physical very active child with complex behavioral and cognitive disabilities.
   
3. A PCA has to work with the funded child. This is a poor fit for our needs. Often we are the only people who can handle our funded child, we'd like the aide to switch tasks and cover the other children. In practice they often fudge things and do this, but they're not supposed to.
4. Any PCA who has the skills and physical abilities to work with our child isn't doing the work for the money. The stipend they receive is very marginal, especially after The Agency takes their cut. Our PCAs are mostly working for experience consistent with their studies and career track. This means any aide will last at most 1-2 years before their career takes them in other directions.
5. The PCAs we've worked with have received little or no relevant training from The Agency. I think, in retrospect, that we should have more directive about what training our PCAs needed prior to starting -- or set up our own training program.
   
6. Reliability: Our PCAs are young, between the ages of 19 and 23 typically. Sometimes their parents don't seem to remember that their daughters are doing real work. Reliability and schedules can be challenging.
   
7. We have had chronic problems with finding aides to fill our allotted hours. Our Agency is supposed to "bank" unused hours, since it seems they're paid for them. We're not confident that the hours have been truly "banked" or if we'll ever get credit for them. Certainly if we leave the agency I suspect we'll lose the ours.
   
8. The PCA program has to be renewed annually. We weren't aware of that and it appears The Agency forgot some of their required tasks. We need to take on more of the tracking of those tasks ourselves.
9. Nanny/funding: I think we'd be better off if we could get the state to simply send us cash for the hours we have PCAs assigned. We could then put the state money and our own money towards a high end Nanny who could work as much with our other children as with our funded child. Alas, I don't think the system works this way.

What we hope to do going forward:

1. Prepare any aide for aggressive behavior. Have they ever been hit? Do they know how to respond?
   
2. Require The Agency to provide training in self-defense and managing aggression issues.
3. Develop a curriculum and reading program for the PCA. For their initial hours assign them readings and study materials before they start work.
4. Expect aides to last 6-12 months and encourage them to keep an eye open for their replacements.
5. Look at alternatives to using The Agency.

Update 10/16/07: The Agency's standing dropped into the sub-basement when we discovered they'd never initiated the required yearly reauthorization procedure - but they continued to provide services and hours while billing the state.

Manipulating the unconscious behavior of persons with impaired frontal and prefrontal lobes

We're learning more about how the conscious and unconscious minds interact in adults with intact frontal lobe functions:

Gordon's Notes: The way we think: reason as an afterthought

... Schaller, a psychologist at the University of British Columbia, in Vancouver, has done research showing that when self-protective instincts are primed — simply by turning down the lights in a room, for instance — white people who are normally tolerant become unconsciously more likely to detect hostility in the faces of black men with neutral expressions.

“Sometimes nonconscious effects can be bigger in sheer magnitude than conscious ones,” Dr. Schaller said, “because we can’t moderate stuff we don’t have conscious access to, and the goal stays active.”

..Using subtle cues for self-improvement is something like trying to tickle yourself, Dr. Bargh said: priming doesn’t work if you’re aware of it. Manipulating others, while possible, is dicey. “We know that as soon as people feel they’re being manipulated, they do the opposite; it backfires,” he said...

Really, it's amazing we do as well as we do. Our mind seems a pretty thin veneer on a heck of a lot of evolutionary programming. I am reasonably certain, however, that self-awareness varies from person to person. In other words, consciousness, like strength, speed, and wit, is a variable....

This has implications for helping people who have impaired frontal lobe functions, including untrapped impulsivity and explosiveness. We may infer that these people act are strongly affected by environmental cues they do not recognize, and that they are unable to alter the unconscious response to those cues.

Perhaps if we monitor patterns of aggression, or of positive emotions, we can begin to correlate these with environmental cues, and adjust the environment accordingly. Smell, wall coloring, tactile triggers, and room lighting might be important, for example. With some study we might be able to build a library of factors known to alter unconscious behavior, and then deliberately modify these in the home and school environment.

Adaptive hockey in Minnesota: Season II for Minnesota Special Hockey

Hot? Steamy? Sweaty?

It's July now, but hockey relief is not far away:

www.mnspecialhockey.org - Minnesota Special Hockey

We are holding a Kick off Event on October 7th at 4pm at the MN Made Ice Center in Edina. This is an opportunity for our experienced skaters to lace up the skates and warm up. It is also a great opportunity to recruit more skaters. Please bring a friend or two or six and encourage them to give hockey a try. Before and after this event we will have an equipment swap at another location in Edina. Details to follow.

This is our third season with MN Special Hockey -- once with the experimental season, last year with the first full season, and now we're looking forward to the 2nd full season. This year there are teams for the north (Blaine), south (Edina - that's us) and east (Woodbury).

Players ages range from about 4-5 to over 45, physical abilities range from non-skater to pickup game quality, cognitive disabilities range from severe ADHD to Aspergers, autism, ASD, and a range of cognitive and behavioral disorders. (Sled Hockey is a different organization: www.mnsledhockey.org). It's quite a range to handle, but so far it's worked. The major change this year, besides the addition of a new team, will be adjusting to players who now have significant experience, and will enter playing a higher skill level than past years.

The gear is expensive, though we can help with that and we get donations. Otherwise we get enough donations that the registration fee is much less than any other hockey organization, and the time commitment is typically only a few hours a week (ie. Not 5 am 4 times/week).

Therapeutic Horse riding: twin cities metro area

My son does very well with horses at his camp, and so we were looking for a rental riding stable. We couldn't find any, the stables in our area discourage the "hourly renter" in favor of lessons and leases. We did, however, come across a therapeutic riding stable:

Who is We Can Ride?

...We Can Ride, Inc. is a 501(c)(3) nonprofit, volunteer-based organization whose mission is serving children and adults living with physical, cognitive, emotional, and behavioral disabilities. Our goal is to enhance our client's skills and well being through challenging programs of therapeutic horseback riding and carriage driving...

This is really interesting; I think we'd qualify for this facility on two counts. We need to take a closer look and report back. They also have a blog.

Williams syndrome: the NYT Magazine review

Williams syndrome has some features in common with autism, but it is, scientifically, much easier to study. For one thing it's much better defined than autism; persons with "Williams syndrome" resemble one another more more closely than persons with "autism". For another, we have a reasonable understanding of the gene injury involved, and we can expect to match up the gene products with the "phenotype" (behaviors).

The NYT Magazine has an extensive review with an excellent video as well. After watching the video, I think I know a woman (through a hockey organization I work with) who has the disorder.

One thing to consider while reading the article. Williams syndrome is fairly well characterized because of the physics of our chromosomes. The defect involves a patch that is prone to being "wrongly ripped", but the absence is not lethal. It is very likely that some of these genes are injured in other ways, or they vary in other ways. Persons with these variations won't have Williams syndrome, but they will have some characteristics of Williams syndrome. Some of those characteristics will have adaptive advantages, some won't. Something to remember when conversing with a "normal" person who's very talkative, doesn't seem to know when to pause for breath, and isn't very good at abstract thought ...

Emphases mine (I chopped out long digressions on the evolution of mind that are of much less concrete interest):

Williams syndrome - David Dobbs - New York Times
July 8, 2007
The Gregarious Brain
By DAVID DOBBS
David Dobbs writes frequently about science and medicine. His last article for the magazine was about depression.

If a person suffers the small genetic accident that creates Williams syndrome, he’ll live with not only some fairly conventional cognitive deficits, like trouble with space and numbers, but also a strange set of traits that researchers call the Williams social phenotype or, less formally, the “Williams personality”: a love of company and conversation combined, often awkwardly, with a poor understanding of social dynamics and a lack of social inhibition...

... (Some people with the disorder as well as many who work with them simply call it Williams.) Williams syndrome rises from a genetic accident during meiosis, when DNA’s double helix is divided into two separate strands, each strand then becoming the genetic material in egg or sperm. Normally the two strands part cleanly, like a zipper’s two halves. But in Williams, about 25 teeth in one of the zippers — 25 genes out of 30,000 in egg or sperm — are torn loose during this parting. When that strand joins another from the other parent to eventually form an embryo, the segment of the DNA missing those 25 genes can’t do its work.

The resulting cognitive deficits lie mainly in the realm of abstract thought. Many with Williams have so vague a concept of space, for instance, that even as adults they will fail at six-piece jigsaw puzzles, easily get lost, draw like a preschooler and struggle to replicate a simple T or X shape built with a half-dozen building blocks. Few can balance a checkbook. These deficits generally erase about 35 points from whatever I.Q. the person would have inherited without the deletion. Since the average I.Q. is 100, this leaves most people with Williams with I.Q.’s in the 60s. Though some can hold simple jobs, they require assistance managing their lives.

The low I.Q., however, ignores two traits that define Williams more distinctly than do its deficits: an exuberant gregariousness and near-normal language skills. Williams people talk a lot, and they talk with pretty much anyone. They appear to truly lack social fear. Indeed, functional brain scans have shown that the brain’s main fear processor, the amygdala, which in most of us shows heightened activity when we see angry or worried faces, shows no reaction when a person with Williams views such faces. It’s as if they see all faces as friendly.

People with Williams tend to lack not just social fear but also social savvy. Lost on them are many meanings, machinations, ideas and intentions that most of us infer from facial expression, body language, context and stock phrasings. If you’re talking with someone with Williams syndrome and look at your watch and say: “Oh, my, look at the time! Well it’s been awfully nice talking with you . . . ,” your conversational partner may well smile brightly, agree that “this is nice” and ask if you’ve ever gone to Disney World. Because of this — and because many of us feel uneasy with people with cognitive disorders, or for that matter with anyone profoundly unlike us — people with Williams can have trouble deepening relationships. This saddens and frustrates them. They know no strangers but can claim few friends.

This paradox — the urge to connect, the inability to fully do so — sits at the center of the Williams puzzle, whether considered as a picture of human need (who hasn’t been shut out of a circle he’d like to join?) or, as a growing number of researchers are finding, a clue to the fundamental drives and tensions that shape social behavior. After being ignored for almost three decades, Williams has recently become one of the most energetically researched neurodevelopmental disability after autism, and it is producing more compelling insights. Autism, for starters, is a highly diverse “spectrum disorder” with ill-defined borders, no identified mechanism and no clearly delineated genetic basis. Williams, in contrast, arises from a known genetic cause and produces a predictable set of traits and behaviors. It is “an experiment of nature,” as the title of one paper puts it, perfect for studying not just how genes create intelligence and sociability but also how our powers of thought combine with our desire to bond to create complex social behavior — a huge arena of interaction that largely determines our fates.

Julie R. Korenberg, a neurogeneticist at Cedars-Sinai Medical Center and at the University of California, Los Angeles, who has helped define the Williams deletion and explore its effects, believes the value of Williams syndrome in examining such questions is almost impossible to overstate. “We’ve long figured that major behavioral traits rose in indirect fashion from a wide array of genes,” Korenberg says. “But here we have this really tiny genetic deletion — of the 20-some-odd genes missing, probably just 3 to 6 create the cognitive and social effects — that reliably creates a distinctive behavioral profile. Williams isn’t just a fascinating mix of traits. It is the most compelling model available for studying the genetic bases of human behavior.”

... Williams syndrome was first identified in 1961 by Dr. J. C. P. Williams of New Zealand. Williams, a cardiologist at Greenlane Hospital in Auckland, noticed that a number of the hospital’s young cardiac patients were small in stature, had elfin facial features and seemed friendly but in some ways were mentally slow. His published delineation of this syndrome put Dr. Williams on the map — off which he promptly and mysteriously fell. Twice offered a position at the prestigious Mayo Clinic in Rochester, Minn., he twice failed to show, disappearing the second time, in the late ’60s, from London, his last known location, with the only trace an unclaimed suitcase later found in a luggage office.

The rarity of Williams syndrome — about 1 in 7,500 people have it, compared with about 1 in 150 for autism or 1 in 800 for Down syndrome — rendered it obscure. Unless they had the syndrome’s distinctive cardiovascular problems (which stem from the absence of the gene that makes blood vessels, heart valves and other tissue elastic and which even today limit the average lifespan of a person with Williams to around 50), most people with Williams were simply considered “mentally retarded.”...

... genes (or their absence) do not hard-wire people for certain behaviors. There is no gene for understanding calculus. But genes do shape behavior and personality, and they do so by creating brain structures and functions that favor certain abilities and appetites more than others.

Reiss and Galaburda’s imaging and autopsy work on Williamses’ brains, for instance, has shown distinct imbalances in structure and synaptic connectivity. This work has led Galaburda to suspect that some of the genes missing in the Williams deletion are “patterning genes,” which direct embryonic development and which in this case dictate brain formation. Work in lab animals has shown that at least one patterning gene choreographs the developmental balance between the brain’s dorsal areas (along the back and the top of the brain) and ventral areas (at the front and bottom). The dorsal areas play a strong role in vision and space and help us recognize other peoples’ intentions; ventral areas figure heavily in language, processing sounds, facial recognition, emotion, music enjoyment and social drive. In an embryo’s first weeks, Galaburda says, patterning genes normally moderate “a sort of turf war going on between these two areas,” with each trying to expand. The results help determine our relative strengths in these areas. We see them in our S.A.T. scores, for example: few of us score the same in math (which draws mostly on dorsal areas) as in language (ventral), and the discrepancy varies widely. The turf war is rarely a draw.

In Williams the imbalance is profound. The brains of people with Williams are on average 15 percent smaller than normal, and almost all this size reduction comes from underdeveloped dorsal regions. Ventral regions, meanwhile, are close to normal and in some areas — auditory processing, for example — are unusually rich in synaptic connections. The genetic deletion predisposes a person not just to weakness in some functions but also to relative (and possibly absolute) strengths in others. The Williams newborn thus arrives facing distinct challenges regarding space and other abstractions but primed to process emotion, sound and language.

This doesn’t mean that specific behaviors are hard-wired. M.I.T. math majors aren’t born doing calculus, and people with Williams don’t enter life telling stories. As Allan Reiss put it: “It’s not just ‘genes make brain make behavior.’ You have environment and experience too.”

... horrible colic that many Williams infants suffer during their first year and before they start to talk well....

... Our extra-big brains allow us to balance bonding and maneuvering in more subtle and complicated ways.

People with Williams, however, don’t do this so well. Generating and detecting deception and veiled meaning requires not just the recognition that people can be bad but a certain level of cognitive power that people with Williams typically lack. In particular it requires what psychologists call “theory of mind,” which is a clear concept of what another person is thinking and the recognition that the other person a) may see the world differently than you do and b) may actually be thinking something different from what he’s saying...

... “And the most important abnormalities in Williams,” he says, “are circuits that have to do with basic regulation of emotions.”

The most significant such finding is a dead connection between the orbitofrontal cortex, an area above the eye sockets and the amygdala, the brain’s fear center. The orbitofrontal cortex (or OFC) is associated with (among other things) prioritizing behavior in social contexts, and earlier studies found that damage to the OFC reduces inhibitions and makes it harder to detect faux pas. The Berman team detected a new contribution to social behavior: They found that while in most people the OFC communicated with the amygdala when viewing threatening faces, the OFC in people with Williams did not. This OFC-amygdala connection worked normally, however, when people with Williams viewed nonsocial threats, like pictures of snakes, sharks or car crashes.

... if Williams confers disadvantage by granting more care than comprehension, reversing this imbalance creates a far more problematic phenotype.

As Robert Sapolsky of the Stanford School of Medicine puts it: “Williams have great interest but little competence. But what about a person who has competence but no warmth, desire or empathy? That’s a sociopath. Sociopaths have great theory of mind. But they couldn’t care less.”

There's a lot here. For example, the incidental comment on infantile colic made my eyebrows jump. Does Williams offer clues to one of the most puzzling and common disorders of infancy -- the mysterious disorder we call "colic"?!

The "dorsal" and "vental" regions remind me of the "left" and "right" hemisphere of the 1980s. Just like "left" and "right" hemispheres the "dorsal" areas sound more "male" and the "ventral" sound more female. One wonders how they morph during adolescence. As to dorsal/ventral balance (and SAT score balance) being rare; I suspect it's not so much that a "balance" is rare but rather that there's a comparatively flat normal distribution -- any point in the curve is 'rare'.

The "patterning genes" are also likely to feature in many stories over the next few years, as we learn how they influence talents and preferences. Sociopaths, of course, are of great interest to all of us these days ...

Incidentally, Williams syndrome, for better and for worse, is likely to go the way of Downs syndrome.

Antidepressants and children: a low class Scientific American article

Scientific American's standards have slipped over the decades, but, judging by a recent article, Scientific American Mind is another step lower. This article on antidepressants and children reads like it came from People magazine.

That's a shame, because buried behind the purple prose and inappropriately entwined with the acute affects of antidepressants, are some important questions and even a bit of science. We have good theoretical reasons, and some animal model evidence, to suggest that prolonged use of psychoactive medications in children may permanently alter brain development. How brain development is altered, and whether that alteration will be for the better or worse in a particular child, we don't know.

I've believed this to be true as long as I can remember, but now it's becoming common wisdom. The question is what to do with the science and with the lack of knowledge.

The answer is fairly simple. Be humble, be cautious, and take measured and appropriate risks.

In other words, if a house is on fire, it's reasonable to climb out a window. If it's not, take the door. If a child and their family is facing severe suffering and risk, then assume risk responsibly and use the medications we have. If other interventions will work, use those. It's not rocket science.

More specifically, the common practices good clinicians follow apply:

1. Old medications with abundant experience are generally preferred even when newer medications have some modest advantages.
2. Use an effective dose, but avoid pushing the dose. Trade-off some marginal benefit for a reduce dose and course.
3. Inform patients and family. This usually works: "If this were my child, I would use this medication. I would do so even knowing that there are risks of lifelong impacts on brain development, I don't know if those would be bad, neutral or even beneficial impacts." Of course if a physician wouldn't give the medication to their own child they should maybe rethink their therapeutic plan.
4. Stay informed, hopefully by something much better than (yech) Scientific American Mind.
   

Vaccines and autism: stop betting on the horse that always loses

Many people believe in things for which there is no evidence. A smaller, but still large, number of people believe in things for which there is not only no evidence, but for which there is great evidence to the contrary. Immunization as a cause for autism is one of those things ...

Why there's no dispelling the vaccines-cause-autism myth. - By Arthur Allen - Slate Magazine

.... People who study irrational beliefs have a variety of ways of explaining why we cling to them. In rational choice theory, what appear to be crazy choices are actually rational, in that they maximize an individual's benefit—or at least make him or her feel good.

Blaming vaccines can promise benefits. Victory in a lawsuit is an obvious one, especially for middle-class parents struggling to care for and educate their unruly and unresponsive kids. Another apparent benefit is the notion, espoused by a network of alternative-medical practitioners and supplement pushers, that if vaccines are the cause, the damage can be repaired, the child made whole. In the homes of autistic children it is not unusual to find cabinets filled with 40 different vitamins and supplements, along with casein-free, gluten-free foods, antibiotics, and other drugs and potions. Each is designed to fix an aspect of the "damage" that vaccines or other "toxins" caused.

"Hope is a powerful drug," says Jim Laidler, a Portland scientist and father of two autistic boys who jumped ship from the vaccine conspiracy a few years ago. In reality, autism has no cure, nor even a clearly defined cause. Science takes its time and often provides no definitive answers. That isn't medicine that's easy to swallow.

Another explanation for the refusal to face facts is what cognitive scientists call confirmation bias. Years ago, when writing an article for the Washington Post Magazine about the Tailwind affair, a screwy piece of journalism about a nonexistent attack on American POWs with sarin gas, I concluded that the story's CNN producers had become wedded to the thesis after interviewing a few unreliable sources. After that, they unconsciously discounted any facts that interfered with their juicy story. They weren't lying—except, perhaps, to themselves. They had brain blindness—confirmation bias.

The same might be said of crusading journalists like David Kirby, author of Evidence of Harm, a book that seemed to corroborate the beliefs of hundreds of parents of autistic children, and UPI reporters Dan Olmsted and Mark Benjamin (the latter now with Salon).

Systems of belief such as religion and even scientific paradigms can lock their adherents into confirmation biases. And then tidbits of fact or gossip appear over the Internet to shore them up. There's a point of no return beyond which it's very hard to change one's views about an important subject.

Then, too, the material in discussion is highly technical and specialized, and most parents aren't truly able to determine which conclusions are reasonable. So they go with their gut, or the zeitgeist message that it makes more sense to trust the "little guy"—the maverick scientist, the alt-med practitioner—than established medicine and public health. "History tells us that a lot of ground-breaking discoveries are made by mavericks who don't follow the mainstream," says Laidler. "What is often left out is that most of the mavericks are just plain wrong. They laughed at Galileo and Edison, but they also laughed at Bozo the Clown and Don Knotts."

And to be sure, there was some basis for suspecting vaccines several years ago, before definitive studies had discounted a link. When the first vaccine theory was proposed in 1998, it appeared in the prestigious British medical journal Lancet and was published by an established London gastroenterologist, Andrew Wakefield. Two years later at a congressional hearing, Wakefield and an Irish virologist, John O'Leary, announced they had found measles viral RNA in the guts of autistic kids with severe bowel problems.

The air of respectability fell away over the years as we learned that Wakefield had serious conflicts of interest (including a 1997 patent application on a measles vaccine to replace the potentially soon-to-be-avoided MMR shot) and that a subsequent publication on measles RNA was probably an artifact of false positives, a common problem in polymerase chain-reaction technology.

The thimerosal theory emerged in a different context. The Centers for Disease Control and Prevention, concerned about cumulative mercury exposures in young children, asked manufacturers in 1999 to phase out thimerosal-containing vaccines. In other countries, such as Denmark and Canada, thimerosal was removed because of new vaccine combinations that either didn't require thimerosal or would be damaged by it. Nowhere was thimerosal removed because of evidence of harm.

But the first CDC study of children's exposures to thimerosal-containing vaccines was difficult to interpret. And anti-mercury activists jumped on the transcript of a 2000 meeting at which the study was scrutinized to argue that something improper was going on. The transcript shows no such thing. But the activists unleashed a public-relations campaign alleging a government and "big pharma" coverup.

That, in turn, proved to be eye candy for environmental groups already enraged by the Bush administration's enlistment of former industry officials in the squashing of environmental regulations. Anti-pollution lawyer Robert F. Kennedy zealously jumped on the thimerosal bandwagon in an "expose" published in Salon and Rolling Stone.

No surprise there. What editor or writer doesn't want to "reveal" that drugmakers and the government conspired to poison a generation of innocent kids. (Kirby's book won a 2005 Investigative Reporters and Editors award.) Where's the passion in the story that some public-health bureaucrats quietly moved to blunt a danger that turned out to be nonexistent?

In the pre-Internet days, the parents of an autistic child living in a small city might have found a handful of other parents in their predicament. Now, they instantly find thousands online. The denominator—healthy children—has disappeared. This is a good thing if you're looking for answers. But the answers may not be good ones. Joined together on the Internet, these actors create a climate of opinion that functions as an echo chamber for conspiracy dittoheads. Even the women's division of the Methodist Church has gotten in on the act, presumably on the grounds that it is fighting for social justice by decrying mercury poisoning, although there was no mercury poisoning, and social justice would be better met by promoting confidence in vaccines.

Kennedy, who wrote blithely in the Huffington Post during the trial that "overwhelming science" had confirmed the link, continues to believe it. So does Rep. Dan Burton, R-Ind., whose circuslike hearing room aired many such claims. Neither cites any solid studies, because they do not exist...

It makes no sense to keep doubling down on the three legged horse that's finished last in the past twenty races. It's long past time for the hard core loyalists to bet on a a new nag.

Years ago it was arguably reasonable to look for a connection between thimerasol and autism, or immunization and autism, but those days have passed. Now it's a waste of precious time and precious energy. Every week brings new insights into cognitive disorders of every kind, including parts of the diverse collection currently labeled "autism" -- that's where we should put our effort.

A treatment for Fragile X syndrome?

Even if this were a perfect treatment, which is very unlikely, it would ordinarily be 10 years away from being available for human use. It's also not a treatment for "autism" (a term of limited clinical value), but the news is still quite exciting. If the results hold up it represents a breakthrough in our understanding of Fragile X syndrome, a relatively common cognitive disorder.

BBC NEWS | Health | Autism symptoms reversed in lab

... US scientists created mice that showed symptoms of Fragile X Syndrome - a leading cause of mental retardation and autism in humans.

They then reversed symptoms of the condition by inhibiting the action of an enzyme in the brain.

The study, by Massachusetts Institute of Technology, appears in Proceedings of the National Academy of Sciences.

Fragile X Syndrome is linked to mutation in a gene carried on the X chromosome called FMR1.

It can cause symptoms ranging from mild learning disabilities to severe autism.

The researchers, based at MIT's Picower Institute for Learning and Memory, targeted an enzyme called PAK which affects the number, size and shape of connection between brain cells.

They found that inhibiting the enzyme stopped mice with Fragile X Syndrome behaving in erratic ways.

Prior to treatment they showed signs of hyperactivity, purposeless and repetitive movements.

Further analysis showed that not only were structural abnormalities in connections between brain cells righted, proper electrical communication was restored between the cells....

...People with Fragile X Syndrome have more dendritic spines than usual, but each is longer and thinner, and transmits weaker electric signals.

Blocking PAK activity in the lab mice corrected these abnormalities.

Researcher Dr Susumu Tonegawa stressed that the mice were not treated until a few weeks after symptoms of disease first appeared.

"This implies that future treatment may still be effective even after symptoms are already pronounced," he said.

Professor Eric Klann, of New York University's Center for Neural Science, agreed that the research was potentially significant.

He said: "This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children."

If it does work in humans with Fragile X, it may be that it has to be used quite early for substantial benefit. The absence of any other treatment, and the theoretical potential to alter the course of the disease, means researchers will push this along faster than a typical drug candidate.

Configuring a simplified OS X computing environment

Gordon's Tech: OS X and Mac Mini tutorial and configuration guide is about an update to a guide I published a while back. It may be of use to anyone configuring a system for a user with visual or other disabilities.

Some varieties of "autism" may be related to neuroligins

This is quite preliminary, but it smells like something worth tracking. Note that some neuroligin mutations have also been associated with schizophrenia.

BBC NEWS | Health | Protein mutations link to autism

Scientists have discovered how mutations in two key proteins may lead to autism.

They have shown one protein increases the excitability of nerve cells, while the other inhibits cell activity.

The University of Texas team found that in normal circumstances the proteins balance each other out.

But the study, published in Neuron, suggests that in people with autism the balance between the proteins is knocked out of kilter.

The findings back the theory that autism involves an imbalance between excitatory and inhibitory connections between nerve cells...

...The proteins - neuroligin-1 and neuroligin-2 - create a physical bridge at the junction - or synapse - of nerve cells, enabling them to make connections with others...

...Neuroligin-1 was associated with excitatory connections and neuroligin-2 with inhibitory connections.

When they introduced a mutant form of neuroligin-1 thought to be carried by some people with autism the number of synapses fell dramatically - and the cells became significantly less excitable...

... carrying a mutant form of neuroligin-1 may depress the number of synapses that make it into adulthood....

The neuroligins are very likely to tell an interesting story ...

Perverse incentives in education, youth baseball and health care

I help coach my older son's baseball team. He's been able to do pretty well in this relatively laid back mainstream league; he's not a star but he is a competent performer. It's been a great experience, but now we've moved up a level.

In this level there's real competition, including a "championship series". So what's the best way to coach a team to contention? Teams are supposed to be relatively balanced, though experienced coaches can game the system. Assume, however, that players really are randomly assigned. Every player has to go up to bat, and every player must play in the field roughly the same number of times a game (though positions are not rotated - the best players go to pitching, catching, 1st base, etc).

There are two approaches, the hard way and the easy way.

The hard way is to focus on each child's strengths and weaknesses and make them the best ball player they can be. Teach them to play as a team and have fun. Teach the fundamentals and develop strategies to work around fixed weaknesses, such as the child who can't field or throw.

The easy way, of course, is to eliminate the weaker players. There are numerous ways to do this, and most of them don't require any conscious effort. The easiest by far is to simply pay less attention to the weaker players, and not to make any extra efforts to help them work past frustrating circumstances. Focus resources instead on keeping the stronger players happy...

In no time at all, the weaker players will be gone, and the stronger will survive. Since every player bats, this can have a dramatic impact on scoring. Eliminating 1-2 players can make a team much stronger.

This is, of course, the method that Texas school districts used to meet their educational mandates when George Bush was governor. They eliminated the weakest students and raised their academic averages.

This behavior is not limited to youth baseball coaches or school teachers. Physicians will soon become expert at it. Medicare is shifting physician reimbursement to be based on "performance". There are several ways to "perform". The hard way is to improve the quality of care. The easy way is to encourage non-performers to move to someone else's practice. There will usually be some naive idealist who can be encouraged to collect all the non-performing patients.

Oh well, in about ten years we'll figure out what we've done wrong and change direction. Ten years after that we'll forget everything and start over again ...

A sentimental story

My First Lesson in Motherhood was published in the NYT "Fashion & Style" section. I read of it through Steven Levitt's ("freakonomics") blog, both of us have adoption stories so we can relate, and there is a clear special needs aspect. I also would have absolved her no matter her choice.

Autism: the label given to a wide and diverse variety of neurodevelopmental disorders

Autism and autism-like disorders are associated with a fairly large number of gene addresses associated with the clinical diagnosis of "autism":

Int J Dev Neurosci. 2007 Apr;25(2):69-85. Epub 2006 Dec 20. A review of gene linkage, association and expression studies in autism and an assessment of convergent evidence. Yang MS, Gill M.

In this article we review the past and present literature on neuro-pathological, genetic linkage, genetic association, and gene expression studies in this disorder. We sought convergent evidence to support particular genes or chromosomal regions that might be likely to contain risk DNA variants. The convergent evidence from these studies supports the current hypotheses that there are multiple genetic loci predisposing to autism, and that genes involved in neurodevelopment are especially important for future genetic studies. Convergent evidence suggests the chromosome regions 7q21.2-q36.2, 16p12.1-p13.3, 6q14.3-q23.2, 2q24.1-q33.1, 17q11.1-q21.2, 1q21-q44 and 3q21.3-q29, are likely to contain risk genes for autism.

It's more evident all the time that we use the word "autism" to describe a diverse group of neuro-developmental disorders with different prognosis and course. It's very hard to come up with good treatments if we're mixing different disorders -- one persons treatment may be ineffective or harmful to another. We need to divide "autism" into at least a half-dozen better characterized disorders.

The end of Down syndrome

Modern eugenics will soon eliminate Down syndrome. (aka Down's syndrome in Canada and the UK)

If researchers come up with genetic tests for Asperger's, or even mere reading disorders, those disorders may also decline in frequency. I hope, however, that the abortion rate for dyslexia will be much less than 90%.

I don't really know what this will mean in the long run, but I don't think we'll be able to do a lot about it.

Update 11/30/08: A screening program in Denmark has cut the Downs syndrome birth rate by 50%.

Behavioral interventions: talking with a child by talking about them

I've complained about the limited numberof behavioral interventions and techniques that we've been able to find. Now I can add one more that we "invented" (rediscovered no doubt).

We know of a child who can become "locked" or "pre-explosive" with very little warning. In this state it is very difficult to negotiate with him. We have been unable to devise a combination of tone, phrasing, cadence, posture, words or content that will divert an explosion more than 10% of the time. If we use the classic techniques of extinction or non-reinforcement he will usually, though not always, become increasingly anxious and angry (40% success). In this case he'll pursue us to maintain contact, and will increase his attention-getting responses until we are obligated to re-engage.

We were wracking our brains to try to devise a different approach when we recalled a technique used in patient care. Every patient, including every physician who's been a patient, knows that it's very hard to follow personal emotionally laden information when it's presented directly. On the other hand, indirect presentation can be very effective. So the physician talks to the patient directly, but knows that only the spouse listening nearby will be able to retain any information. The real communication is thus to the spouse. Alternatively, if one really wants the patient to retain information from the physician, one presents it to the the spouse so the patient is a bystander. (The latter is tricky since patients may think the physician is being demeaning, though in reality the physician knows they would have the same trouble were they in the patient's shoes.)

We've had some success with adopting this technique to our circumstances, though it has the significant disadvantage of requiring two persons in the room. (Ideally an other adult, though another child may do and, in a pinch, I'm going to try talking to the dog.) I direct the questions to the other adult (child, dog) in a neutral, casual way. "X seems to be kind of stuck. He is anxious/worried/angry about _____ because I ____. Can you think of something we could do to help him ....". We talk back and forth, going through the negotiation and discussion process that one would, ideally, hold directly with the affected child.

This has been far more successful than classic "extinction" or non-reinforcement. It seems to induce much less anxiety (we have not truly left), it is clear that the child is the focus of concern, yet it is also true that the child is in a neutral, observing, listening posture. Often he is then able to re-engage, gradually joining a process of negotiation. The moment the negotiation and communication begin, we know "we" (all of us) have won.

Worth passing on, perhaps.

PS. The technique commonly used with teenagers of having every important conversation while driving a car works on the same principle.

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 ...