Autism: 8th most popular Google news search

Ahead of the 2006 NFL draft, but behind Martina Hingis:

Google Press Center: Zeitgeist

1. paris hilton
2. orlando bloom
3. cancer
4. podcasting
5. hurricane katrina
6. bankruptcy
7. martina hingis
8. autism
9. 2006 nfl draft
10. celebrity big brother 2006

The special needs pendulum swings: parents at fault again?

If Carey had written this in Parenting as Therapy for Child’s Mental Disorders (NYT):

And now, some researchers and doctors are looking instead at how very superior parenting skills can help children with cognitive abilities do better with fewer medications ...

I'd have been encouraged. Alas, he wrote:

And now, some researchers and doctors are looking again at how inconsistent, overly permissive or uncertain child-rearing styles might worsen children’s problems...

The choice phrasing tells us a lot about Mr. Carey, or his editor's, true beliefs. The "bad parent" meme is comforting for those who mistake an easy child for superior parenting skills.

I'll mine the story for anything valuable, but first, my own prejudices - based in part on the literature and in part on experience. I suspect children can be sorted into 3 categories:

1. Type I, neurotypical: Does well with even the most haphazard parenting, assuming love, caring and a safe home environment.
   
   
2. Type II, focal and well defined cognitive disorder and isolated ADHD, Asperger's or high-functioning Autism: A personalized but reasonably stable mix of positive and negative reinforcers requiring at least twice the parenting input of the neurotypical, as well as professional assistance. This is what the article is describing.
   
   
3. Type III, complex behavioral and cognitive disorders: Parenting books are good for a bitter laugh. Experienced and reputable professionals are quick to say the problem set is beyond their experience, the best try to help with a referral. A successful outcome is uncertain. Parenting input is four to five times the neurotypical and parental burnout must be actively managed. Professional assistance is mandatory but will require an exceptional skillset. The behavioral and medication program requires continuous quality improvement with active monitoring, feedback, review and modification. Interventions are often empiric -- experiments that are implemented based on measured results.
   

Now that I've vented a bit, is there anything of value in the article? Here are my excerpts, with emphases and links added. I've carefully deleted the language where the author's yearning for "discipline" leaks out ...

... In a study involving 128 families, psychologists at the university had found that about a third of parents who completed the program saw enough improvement in their children that they had decided that medication was unnecessary. The other two-thirds put their children on stimulant medication at school but at doses significantly lower those typically prescribed, said William Pelham, a psychologist who is director of the Center for Children and Families at [the University of] Buffalo and the senior author of the study. Eighty percent of the families who participated in the program, with follow-up parent training, decided that their children did not need medication at home.

.... Behavior modification for A.D.H.D. and for related problems, like habitually disruptive or defiant behavior, is based on a straightforward system of rewards and consequences. Parents reward every good or cooperative act they see: small things, like simply paying attention for a few moments, earn an “attaboy.” Completing homework without complaint might earn time on a Gameboy. Parents remove privileges, like television and playtime, or impose a “time out,” in response to defiance and other misbehavior.

And they learn to ignore annoying but harmless attempts to win attention, like making weird noises, tapping or acting like a baby.

... family-based programs insist that parents try to maintain a clear, neutral tone when instructing their children, or penalizing them.

Bluntness, for example, is a virtue. Saying to a child, “Would you put your toys back in the box, please?” turns a command into a question. Saying, “Let’s put your toys back in the box,” implies collaboration. An unadorned “Put your toys back in the box” is clearer for everyone, psychologists say, especially so for a child who is highly distractible.

... Their instructions to Peter and Scott became more precise, as well. Saying “Clean your room” is too vague and covers a half-dozen tasks, Roman Popczynski, the boys’ father, said. Peter might wonder where to start, or just decide it was too much to worry about, and give up, his father said. “Put your laundry in the hamper” is much more likely to get results, he said, and lead to the next clear step, like “Put your toys where they belong.”

Multiple commands are also confounding: “Put away your crayons, clear away the table, and organize your homework, please” leaves a child wondering which to do first, and whether it is too much work to finish.

... Like most who try to use behavior modification techniques, the Popczynskis relied on a daily report card to keep a running tally of Peter’s specific problem behaviors, like wandering attention, ignoring commands or defiance, and his efforts to correct them.

For instance, at the beginning, Peter, then 7, would get a check mark every time he ignored more than two commands to do his homework, put away his toys or brush his teeth, but he would earn immediate praise if he got started. He received check marks when he slid off his chair at dinner, and earned approval if he stayed seated.

At bedtime he accumulated marks if he pulled delay tactics. A tantrum resulted in instant punishment: a timeout of 5 to 10 minutes, shortened for good behavior. The report card was posted on the refrigerator.

The Popczynskis started slowly. They measured how many marks Peter recorded in a normal day, and at first rewarded him if he reduced the number by even one: with an extra 15 minutes on Game Cube, for example. If he had more good days than bad ones over the course of a week, he got to choose from a bag of toys from the $1 store.

Mr. and Ms. Popczynski continued to raise the standard, one checkmark at a time, until Peter hit zero consistently.

“You want them to be able to succeed,” Mr. Popczynski said. “If you make it too hard, they’ll just give up, and so will you.”

The Buffalo program is more comprehensive than most: psychologists run a summer camp here, employing the same principles, and, during the school year, regularly visit the teachers of every child in the program. Those teachers who agree to cooperate — most do — keep daily behavior report cards for the child too, in effect providing full coverage for a child’s every waking hour.

... The Popczynskis did well in part because Peter’s difficulties were not severe, he was a capable student and his most disruptive behavior came out at home, Mr. Popczynski said. And the couple were able to share the many duties.

... Researchers have also studied a different approach to behavior treatment, called cognitive behavior therapy. This approach engages children directly, and signs up parents as helpers. The children meet in groups to speak with a therapist, and learn elementary ways to identify and manage their anger, frustration and hopelessness. The parents learn in sessions how to reinforce those lessons at home.

Studies find that up to three quarters of children who suffer from depression, anxiety or obsessive-compulsive disorder find relief of their symptoms with the help of this kind of therapy, which usually involves once-a-week sessions for a few months or so.

... “You can’t let your foot off the accelerator with something like behavioral modification for A.D.H.D., for example,” said Dr. Gabrielle Carlson, director of child and adolescent psychiatry at Stony Brook University School of Medicine, who used the treatment for her own son. “It’s like making changes in diet and exercise to lose weight: you don’t lose 20 pounds and then you’re home free and can eat ice cream and cake again. No, it’s a complete lifestyle change, and when you have a child with any of these psychiatric difficulties you have to stay on the program, for as long as it takes.”

The gap between the facts of the story, and the framing of those facts, is so large I wonder if the drivel came from an brain-dead editor rather than the journalist -- in which case Mr. Carey has my sympathies.

The behavioral modification and cognitive therapy interventions were appropriately presented in the context of specific conditions for which they're most appropriate. The Popczynskis are clearly doing 2-3 times the work of the standard parent, and they have had good success with a child how has a focal disorder, non-severe problems, and is academically successful -- exactly as one would expect.

The descriptions of the Buffalo program match the "state of the art" as we know it, though this approach needs modification for the Type III child. Emotional neutrality is not too hard to maintain when a child has merely shattered a family heirloom, rather harder in the midst of a sibling assault. Note that the teachers almost always were supportive of the programs, I suspect the best and most experienced teachers find the program merely formalized their routine practices.

I hope the behavior modification program becomes more widely available and continues to be covered by insurance programs. In the meantime, the center's web site has some resources to explore.

Update: Alas, the Buffalo program's website is just a skeleton, the 'resources for professionals' section is empty right now. Maybe later ....

Update 1/7/06: Mr. Carey responded to my inquiries. He did write the entire thing, so no editorial malfeasance. Alas, he didn't have the slightest understanding of my concerns, but the note was polite.

Configuring a simplified computer: OS X shines again

Years ago there were child-oriented GUI overlays for Windows 3.1. Now there's nothing. Configuring a simplified or 'safe' version of XP is about impossible.

The Mac situation is much better: Configuring a simplified OS X machine: Simple Finder.

This is a good solution for younger children, elders (we'll all be there if we're lucky), and anyone overwhelmed by the staggering complexity of modern computer systems. Alas, there aren't a full suite of applications to match the Simple Finder -- maybe soon? (I need to play with Front Row and the Apple Remote a bit more to see what one can do with those.)

Autism no more -- the end of a diagnosis

The diagnosis isn't quite dead, but it's in the ICU:

Entrez Nat Neurosci. 2006 Oct;9(10):1218-20. Time to give up on a single explanation for autism. Francesca Happe, Angelica Ronald and Robert Plomin are at the Institute of Psychiatry, Kings College London, De Crispigny Park, London SE5 8AF, UK.

... We argue that there will be no single (genetic or cognitive) cause for the diverse symptoms defining autism. We present recent evidence of behavioral fractionation of social impairment, communication difficulties and rigid and repetitive behaviors. Twin data suggest largely nonoverlapping genes acting on each of these traits. At the cognitive level, too, attempts at a single explanation for the symptoms of autism have failed. Implications for research and treatment are discussed...

A diagnostic concept that doesn't correspond to etiology, manifestation, prognostic course or therapeutic intervention is, clinically speaking, useless. The diagnosis of autism will remain important as a label for obtaining research funding, for creating budgets, and for obtaining resources for care and treatment; but as a clinical concept it's on its last legs. We'll have to come up with new ways to think about a large variety of neurobehavioral disorders. Schizophrenia, as a concept, is in similar shape. Sometime in the next 20 years they'll both join 'dropsy' and 'soldier's heart' in the bin of discarded diagnoses.

This is very good. In science as in books of magical fantasy, power begins by knowing the name of the enemy....

Seeking: LCD with 60-80 ppi/dpi at optimal resolution

Who would ever want a 17" LCD display with a 1024x768 native resolution?! It's so wrong. It's likely to only have VGA input, probably barely works with a modern OS, and most people would want at least a 1200 or 1400 pixel horizontal resolution at this display size.

Ahh, but what about persons with diminished vision? OS X 10.4 does not scale the UI very well. XP seems to do a bit better with changing font dpi settings, but it doesn't hold up in real world use (too many apps expect a fixed dpi). LCDs don't run well at anything less than maximal resolution, and that resolution expects 80-120 dpi. I want about 60-80 dpi for the person I'm buying for (macular degeneration, post-lens replacement, etc).

I think a 17" LCD with a 4x3 aspect ratio and 1024 horizontal might do, but they're dreadfully hard to find. I might do better with a cheapo 19-20" squashed" (16:9 or 3:2 - DVD friendly) form factor with 1200 horizontal ...

Update 12/9/06: Turns out NexTag is great at this sort of thing. I really need to pay more attention to them. Alas, I can't find a 17" with 1024, 15" is the largest display.

• 15" and 1024x768
• 17-20" and 1280x1024

The 19" 1280s look more promising, though there really very few options ...

• 19" Samsung LCD, 1280 x 1024 for about $250 might work ... It has both VGA and DVI, but I think it's almost unavailable.
  
• AOC LM960 is another budget 19" LCD at 1280, but it's working display is probably smaller than the Samsung.
• HP Pavillion F1905E
• HANNS-G JC-199D
• FUJIPLUS FP-988D

Suggestions welcome!

Update 12/11/06: See the comment describing the value of the 20" iMac display with the Ctrl-mouse wheel zoom feature. A usenet comment from rtn corrected my assertion about LCDs and sharp display -- with a DVI interface the display is also sharp at integer fractions of the maximal resolution (edited slightly):

LCDs produce sharp results at their native res, and also typically at integer fractions thereof, if you use a digital connection, like DVI or HDMI.

Get a 1600x1200 and run it 800x600, or 1920x1200 wide* and run it at 960x600.

Using a 30in 2560x1600 at 1280x800 is also a possibility, and you wouldn't even need a dual-link DVI card.

* First make sure the graphics card/chip can be configured to emit custom resolutions, as 960 horizontal isn't exactly std.

Regards, Bob Niland
http://www.access-one.com/rjn

In practice 17" CRTs are still on the market that will cost less than a 1600x1200 LCD panel, and they're sharp at a wide range of resolutions, so this probably won't affect my buying decision this time around. In future, however, as 1920 resolutions become commonplace, the 960 horizontal option for persons with vision limitations will become relevant.

NYT on polypharmacy in the young

I imagine Gardner Harris started this New York Times Health review thinking he'd expose a terrible practice of indiscriminant medication of the young. However he began, its obvious by the time he'd met with a few families and experts he'd been humbled. These families and children are suffering greatly; there are no good answers.

The one lesson we can all draw is humility. The title "proof is scant" is unusually well chosen and inarguable. We just don't know. Each of these children is an experiment of one.

If we funded psychiatric research in this country (the GOP appears to have an ideologic opposition to pyschiatry) we'd treat each child as an experiment, and gather every bit of data we could on risks and benefits in a national database with robust privacy protections (anonymized data). We definitely can't rely on the pharmaceutical companies; we've found negligence and possibly fraud in their research practices in the past few years.

Until we get a government that respects science in general, and psychiatry in particular, progress will be slow indeed.

A novel approach to reading: Big Guy Books

A small group of entrepreneurs has assembled a series of photojournalist fiction books under their own label:

About Us - Big Guy Books

...Big Guy Books, Inc, is built on the belief that literacy is a birthright for every child. But in a world of highly visual, fast-paced video entertainment, we are losing a generation of young children to growing masses of “reluctant readers.” It is our mission to create books that are stimulating and engaging enough to recapture these children and instill in them the joy of reading and the thrill of learning.

The Time Soldiers series looks like a winner in our home. The photographs/cgi effects are very engaging, and the narrative is quite well done. They're worth a look for the reluctant reader. I hope they succeed -- and that they manage to stay independent for a while.

Update 12/9/06: We bought the T-Rex (book 2) softcover -- and the pages fell out on first reading. It's a thin glue binding strip. I'll see how the publisher responds to my email, in the meantime if you buy one of these books, buy hardcover and buy at a bookstore where you can check the binding

Update 12/23/06: Big Guy Books quickly offered to swap my paperback for a hardcover, and I was ok with that -- just didn't have time to do it. Then they sent me the hardcover anyway, and a bit more. Really, it was more than was needed to mollify me. Turns out their printer was incompetent and they've since fired them. They promise the problem is fixed in the newer books, but if you're buying the early books I'd recommend either hardcover or buy them from a bookstore where returns are simple. Not all the early softcovers are defective, but you may not be able to spot the problem printings right away.

Nature and nurture: when opinion meets reality

I enjoyed this self-deprecating and British-humor style post on how one's strongly held opinions can change when reality strikes:

Whitterer on Autism:

... I have always had very strong views on the nature v. nurture debate and closely align myself with the nurture camp. Or at least I did until I was presented with two autistic boys. I quickly changed allegiance to the opposite camp...

One of my favorite stories about parenting comes from old friends of ours. After four easy children they were quietly persuaded they were brilliant parents, and were modestly helping others learn the right way to do things. Then they adopted a fifth child. That was the end of certainty.

Now, I do think they really were exceptional parents -- but they had overestimated how much of their children's behaviors were a result of their efforts vs. a child's temperament. Human temperament (not the same as character, but related) is very much determined by genetic and intrauterine factors -- adoption and special needs children teach this lesson quite quickly and firmly.

Remember this the next time you quietly think what a bad parent someone must be, or what a good parent another person is. I've been told I'm a brilliant parent when out with one child, and ignored attempts at withering stares with another child. As nearly as I can tell brutal education has made me a pretty decent parent, but the praise and scorn were misguided.

You can't judge parental skill without knowing whether they're playing in the minor leagues (easy child) or the majors. I play in the major leagues, so my game has to be sharp. If you played in the majors you'd be good too.

Whitterer on Autism: a library of techniques

I came across this blog through a comment on an older post of mine. Whitterer on Autism is a more personal blog than this one, with much discussion of what works and doesn't work. I think it will be a handy source of new techniques to try. I've added it my own bloglines collection.

Psychiatric diagnoses: 200 years behind

I've been saying this for years, so it's nice to see that academic psychiatrists, at least, are saying it publicly:

What's Wrong With a Child? Psychiatrists Often Disagree - New York Times

..."Psychiatry has made great strides in helping kids manage mental illness, particularly moderate conditions, but the system of diagnosis is still 200 to 300 years behind other branches of medicine", said Dr. E. Jane Costello, a professor of psychiatry and behavioral sciences at Duke University. "On an individual level, for many parents and families, the experience can be a disaster"

The NYT article is recommended reading for every family with a special needs child.

The relatively meaningless of pyschiatric labels is not new. The family of DSM manuals were all about trying to get a relatively solid grasp on the fluid and sometimes formless world of human cognitive and behavioral variability. Reams of books have been written about social construction of psychiatric diagnoses; many have been misguided but they're not without an element of truth. Psychiatric "diagnoseses" have been much more craft than science.

Psychiatrists are not to blame for being unable to label the formless -- though they could be dinged for not speaking up more clearly about the nosologic (naming) problems they face. In their defense patients and families don't usually want to hear than we're flying blind in this domain. A facade of certainty can be mutually reasurring.

Most of all, labels are about getting services, managing friends and relativelys, and placating schools -- we use what works for those purposes. The last anectdote in the article really tells the whole story:

Camille Evans, a mother in Brooklyn whose son’s illness was tagged with a half-dozen different diagnoses in the last several years, said she concluded, after seeing several psychiatrists, that the boy’s silences and learning difficulties were best understood as a mild form of autism.

“That’s the diagnosis that I think fits him best, and I’ve just about heard them all,” Ms. Evans said.

The label is not perfect, she said, but it is more specific than “developmental delay” — one diagnosis they heard — and does not prime him for aggressive treatment with drugs like attention deficit disorder or bipolar disorder would. He has not responded well to the drugs he has tried.

“Most important for me,” Ms. Evans said, “the diagnosis gives him access to other things, like speech therapy, occupational therapy and attention from a neurologist. And for now it seems to be moving him in the right direction.”

Access to other things, not too discouraging, not too scary. The label works for now and for this family, and, honestly, that makes it right for clinical use, if not for research purposes.

Psychiatric therapy will continue to be empiric at best -- try a diagnosis, try a therapy, try another. Most of the time it helps, sometimes it helps a lot. We're still in the stone ages, but functional MRI, gene analysis and other measures to ground the behavioral in the physical are slowly moving us into the bronze age.

Bottom line: humility is indicated. Good to have it.

PS. Psychiatrists should also stop blaming pediatricians and family physicians for assigning labels that others change. It's not like psychiatrics (or neurologists for that matter) can do any better. Remember - humility.

PPS. My guess? That behavioral disorders in children are particularly dynamic because they represent the combination of initial brain injury, ongoing injury, and unusually active ongoing reparative processes. Superimpose the immense brain morphing impact of adolescence on that and it's no wonder the best available treatment, and the most convenient label, will change from season to season.

Minnesota Special Hockey season is on: accepting new skaters

Minnesota Special Hockey's season has launched, but we're still accepting new skaters and those who'd like to learn to skate and play hockey. Visit us at our main site or the Announcements Blog.

Autism, Downs Syndrome, and college: NYT review

Fascinating. I'll try to update this later. There's a lot to say and comment on. I did smile when I read this comment on engineering:

Students on the Spectrum - New York Times

... Of course, high-functioning people on the spectrum have long attended college. Tony Attwood , a psychologist and author of “The Complete Guide to Asperger’s Syndrome,” tells of trying to spot the professor with Asperger’s when he’s on the lecture circuit. That is, unless Dr. Attwood is at an engineering school, in which case he tries to spot the professors who don’t have Asperger’s.

There's a similar article on Down's Syndrome and post-secondary education. I'll comment on that as well.

There are implications for family financial planning and especially 529 plans for children with special needs.

Cognitive disability and emotional/behavioral problems: a study

This week's JAMA has summative results from a longitudinal study of 578 Australian children and adolescents receiving services for intellectual disability. The study started in 1991 with 5 to 19.5 year olds, so the group is now 20 to 35. The study has produced several similar articles, this is one of the bigger ones.

Einfeld et al. Psychopathology in young people with intellectual disability. JAMA. 2006 Oct 25;296(16):1981-9.:

CONTEXT: Comorbid severe mental health problems complicating intellectual disability are a common and costly public health problem. Although these problems are known to begin in early childhood, little is known of how they evolve over time or whether they continue into adulthood.

... MAIN OUTCOME MEASURES: The Developmental Behaviour Checklist (DBC), a validated measure of psychopathology in young people with intellectual disability, completed by parents or other caregivers. Changes over time in the Total Behaviour Problem Score and 5 subscale scores of the DBC scores were modeled using growth curve analysis. ...

RESULTS: High initial levels of behavioral and emotional disturbance decreased only slowly over time, remaining high into young adulthood, declining by 1.05 per year on the DBC Total Behaviour Problem Score. Overall severity of psychopathology was similar across mild to severe ranges of intellectual disability (with mean Total Behaviour Problem Scores of approximately 44).

Psychopathology decreased more in boys than girls over time (boys starting with scores 2.61 points higher at baseline and ending with scores 2.57 points lower at wave 4), and more so in participants with mild intellectual disability compared with those with severe or profound intellectual disability who diverged from having scores 0.53 points lower at study commencement increasing to a difference of 6.98 points below severely affected children by wave 4. This trend was observed in each of the subscales, except the social-relating disturbance subscale, which increased over time. Prevalence of participants meeting criteria for major psychopathology or definite psychiatric disorder decreased from 41% at wave 1 to 31% at wave 4. Few of the participants (10%) with psychopathology received mental health interventions during the study period.

It's a dense and not very readable article. I couldn't figure out what "normal" children score on their developmental behaviour checklist; there's no control group in this study. They did say a score of 46 was definitely pathologic, so the mean score starting out was just below that. Boys started out a bit worse than girls and ended up slightly better, but you have to squint to see the difference. I doubt it means all that much.

I found the negative spin of the article a bit odd. Did anyone really expect that these behavioral disorders would completely resolve? I thought it was quite encouraging that a quarter of children who started out with a psychicatric disorder ended up without one - despite what appeared to be few mental health interventions. The low rate of intervention is remarkable, I wonder if it's any different in the US?

So the bottom line? Boys seem to improve more, but boys and girls don't end up that differently. Without much mental health intervention there's still very significant improvement over 10 years or so. We might do much better with half-decent pychiatric services, but that is not proven (Personally I would bet on it).

An Adaptive iPod Shuffle

The iPod Shuffle can be, with a few adaptations, a remarkably flexible device for persons with visual, cognitive, or motor impairments.

Medical care of cognitively disabled persons

The American Academy of Family Practice provides public access to their journal articles. They are written for physicians, but they're relatively readable for informed laypersons. Relatives, caretakers and friends of persons with cognitive disabilities may want to review and keep a recent summary of care recommendations: Medical Care of Adults with Mental Retardation - June 15, 2006. It's written specifically for MR, but it's a good source of ideas for the care of all persons with cognitive disability.

I don't haven't seen anything of this sort before. Kudos to AFP for covering the topic. (A later issue also covers care of the homeless, an unfortunately related domain.)

Using electric shocks to manage the behavior of special needs children and adults

New York state's Rotenberg center uses skin shock to change the behavior of special needs children. It sounds pretty much identical to the use of shock collars to change the behaviors of dogs. The head of the school is a disciple of BF Skinner, of operant conditioning (behaviorism fame).

All animals, including humans, respond to a range of rewards and punishments. Punishments are all a form of "pain", whether than pain is psychic (time out, shame, isolation) or physical (spanking, shocking). Humans are not very different from dogs and other mammals; methods used to train dolphins work quite well on husbands.

Remote electric shock, whether used on dogs or humans is another form of punishment. Some animals might "prefer" it to isolation or time out, others would prefer a time out, still others may respond primarily to positive reinforcement and weakly to negative reinforcement.

The problem with shock is the same as with spanking and torture (the most extreme form of negative reinforcement). It is very hard to do it appropriately -- especially on other humans. I suspect it's easier to be calm and measured about using a shock-collar on a dog, but, on the other hand, I've seen very good and loving dog "masters" unintentionally abuse "training" (choke) chains on dogs who are being obtuse. Another problem is that both animals and humans develop tolerance to negative reinforcement. Voltage levels rise. A dog who responded to a simple snap of a training collar needs a much harder snap. Aversive measures must be metered to avoid tolerance.

This is difficult territory. We need wisdom, science, humility and a good measure of dread to walk these roads with relatively safety. Last resorts indeed.

When predictions fail: The story of a special needs football player

Michael Oher was a “special needs” student — by any criteria. Based on the journalist's description (these are often unreliable), he sounds like he might have met the diagnostic criteria for autism spectrum disorder as a younger student — though that diagnosis does not appear to have been made.

Mr. Oher had immensely bad luck for over half his life, then vastly better luck since then. His story was in the NYT Magazine this weekend. He’s expected to become a very well paid professional football player.

Stories don’t end with a magazine article. Disaster could strike Mike Oher tomorrow, or he could retire from football a wealthy man. One thing will not change, however. No matter what befalls Mr. Oher in the years to come, he, and his adoptive family and teachers and friends, have broken “the four minute mile” of personal doom. The impossible, once done, becomes the conceivable, then perhaps the common.

BTW, if you don’t shed tears by the end of the article, your situation is indeed dire.

Autism basic science: gene regulation diferences in "identical" twins

A recent journal article (full text is free) is remarkable on several levels:

Gene expression profiling of lymphoblastoid cell lines from monozygotic twins discordant in severity of autism reveals differential regulation of neurologically relevant genes. Hu VW, Frank BC, Heine S, Lee NH, Quackenbush J. BMC Genomics. 2006 May 18;7:118.

BACKGROUND: The autism spectrum encompasses a set of complex multigenic developmental disorders that severely impact the development of language, non-verbal communication, and social skills, and are associated with odd, stereotyped, repetitive behavior and restricted interests...

RESULTS: Here we demonstrate, for the first time, that lymphoblastoid cell lines from monozygotic twins discordant with respect to severity of autism and/or language impairment exhibit differential gene expression patterns on DNA microarrays. Furthermore, we show that genes important to the development, structure, and/or function of the nervous system are among the most differentially expressed genes, and that many of these genes map closely in silico to chromosomal regions containing previously reported autism candidate genes or quantitative trait loci.

CONCLUSION: Our results provide evidence that novel candidate genes for autism may be differentially expressed in lymphoid cell lines from individuals with autism spectrum disorders. This finding further suggests the possibility of developing a molecular screen for autism based on expressed biomarkers in peripheral blood lymphocytes, an easily accessible tissue. In addition, gene networks are identified that may play a role in the pathophysiology of autism.

Well, there's a lot here. For starters, this was published not in a traditional journal, but rather on BioMed Central -- very cutting edge. Secondly, it begins with a very concise and quite excellent definition of autism spectrum disorder. Thirdly, we see again that twins who share the same genes may regulate gene expression them very differently, and thus become quite different people. Why do they express genes differently? Ahh, that's the next level of the great game.

Fourthly, there's a prospect for using microarrays to study gene expression using blood samples in autism -- a great research tool. Lastly, the rate of progress in the last year is breathtaking.

This, of course, does not translate into therapy, management, optimization or prevention ... yet.

ARC Fun Fest and MN Special Hockey book

Minnesota Special Hockey: MN Special Hockey at ARC Fall Fun Fest. The Fun Fest is 10/27, more details at the link.

Building a massive Lego Model: An adaptive approach

Building one of the massive LEGO kits, like Jabba's Sail Barge, is a cross between classical model building and puzzle solving. It’s mechanically much easier to manage than traditional (toxic) glue based models, but the challenge of locating pieces is a bit like finding puzzle pieces. The directions are quite good, but they require attention to follow. Assembly is the equivalent of a very long and very intense occupational therapy session testing a wide range of skills. For a child who loves Star Wars, fantasy, and playing with small pieces and spaces it’s almost irresistible.

It is somewhat expensive at $75, but it’s much cheaper than OT. It’s a shame insurance doesn’t pay for it! A rash promise led to purchasing this kit; here are some tips we learned putting this together. In this case the modeler loves the work and the play, but has a dark talent for scattering small pieces of toys across the continent. Spatial orientation and sequencing are difficult, the kit exercises these talents well.

A few tips:

1. Never allow unmanaged access to the kit or the pieces. It is trivial to lose pieces. In our case even a few minutes of uncontrolled access would be lethal to the kit. We keep the assembled pieces in a plastic bin and the parts in other smaller bins — all stored in an inaccessible area between build sessions.
   
   
2. There are hundreds of parts. The biggest construction challenge is finding parts. Clear baggies are your friends – gallon and quart/liter sized. Divide parts up first by color (odd colors go together) then by size (big/small) and store them in baggies. Some colors may get partitioned into 3 sizes. Do this dividing beforehand, you don’t want your modeler doing this.
   
   
3. Consider putting similar parts together. This does help with search, though sometimes separating them is a nuisance. It’s kind of fun though.
   
   
4. Search for parts in the baggies, preferably without opening the baggies. This cuts down on lost parts. When a baggie has to be opened, secure the baggie and try to allow only the selected part to escape.
   
   
5. Feed one part at a time. It’s tempting to put together a pile of parts for a given project step, but this introduces too many distracting and confusing variables. Parts vanish.
   
   
6. Speak sparingly. Use gestures and pointing to help with part location and assembly.
   
   
7. Imagine you’re assisting at surgery (I used to do this when I was a real doctor). Anticipate your surgeon's next step. Deliver the key piece with invisible grace just as it’s needed.
   
   
8. Work in many short sessions. Depending on your modeler’s mood and strength they may do more or less part searching. We do 2–6 pages at a time.
   
   
9. Sometimes my modeler wanted to find pieces himself, sometimes he wanted more help. Attentiveness, flexibility, patience and concentration are valuable. This model teaches more than one skill!
   

The average 47 yo will probably need to build this sucker over many multi-hour shifts, ending each as their eyes give out. A special needs child who’s highly motivated can build it, with help, over perhaps 10 2–3 hour sessions.

PS. We completed the sand crawler perfectly. My modeler was very proud.

The unreasonable non-toxicity of Ritalin

Some drugs, like acetominophen (tylenol), are considered "safe" when they are fundamentally quite toxic.

Others, like Ritalin, are properly regarded with great suspicion. How can such a powerful medication be safe for decades of use in a developing brain?

Surprisingly, the literature is reassuring. I can now add some informal updates courtesy of a family member who does NIH funded research in this domain. The research community has long expected ritalin to have some deleterious effect on neuronal proliferation, but recently concluded studies, and those still in progress, will likely show (again) surprisingly negative results. Probably Ritalin has some effect on brain development, but the effect size is small.

Hard to believe really, but it does affirm my prejudice in favor of this well aged medication. Given Ritalin's safety record, it would take a lot to make me shift to another medication of the same or similar class.

MN Special Hockey registration for 2006-2007 is now open!

The Minnesota Special Hockey is preparing for Season II. We're recruiting skaters, and would-be skaters, with developmental disabilities living in the Twin Cities area.

Please spread the word. The registration deadline is 10/16/06.

Ultrasound, neuronal migration, and autism

Autism is thought to be a disorder of neuronal migration with a genetic and intrauterine environmental etiology. Although it is not clear that the overall prevalence of childhood cognitive disorders has substantially increased, the diagnosis of autism is made far more frequently than in years past. This may represent a change in how we conceptualize cognitive disorders of childhood, or it may reflect a true change in disease pattern and/or frequency.

There is strong evidence for a polygenic predisposition to autism; a collection of genetic traits that favor neuronal migration disorders. The evidence is fairly strong that this is not related to mercury levels, thimerasol preservatives, or immunization practices. What else can one look for in the environment? What has changed in the past 20 years? The list is very long, which is why this study is mildly interesting (emphases and annotation mine):

Ultrasound Affects Embryonic Mouse Brain Development

.... The prolonged and frequent use of ultrasound on pregnant mice causes brain abnormalities in the developing mouse fetus, Yale School of Medicine researchers report August 7 in the Proceedings of the National Academy of Sciences.

'Proper migration of neurons during development is essential for normal development of the cerebral cortex and its function,' said Pasko Rakic, M.D., chair of the Department of Neurobiology and senior author of the study. 'We have observed that a small but significant number of neurons in the mouse embryonic brain do not migrate to their proper positions in the cerebral cortex following prolonged and frequent exposure to ultrasound.'

Neurons in mammals multiply early in fetal development and then migrate to their final destinations following an inside-to-outside sequence. The destination defines the neurons' connectivity and function. It has been reported earlier by others that abnormal cortical function may result when this process is grossly altered by genetic or environmental factors such as alcohol and drugs.

The study reported on August 7 is believed to be the first to look at the possible effect of ultrasound waves (USW) on neuronal migration in mice at a late stage of embryonic brain development, when the migratory pathways are the longest and may be most vulnerable. The Yale team injected more than 335 fetal mice at embryonic day 16 with special markers to track neuronal development. Exposure to USW for 30 minutes or longer [jf: adjusting for mouse lifespans and gestation, this would be hours to days in a human] caused a small but statistically significant number of neurons to remain scattered within inappropriate cortical layers and/or in the adjacent white matter.

'The magnitude of dispersion of labeled neurons was highly variable but increased with duration of exposure to ultrasound waves,' Rakic said. 'These findings suggested the desirability of further work in this area. We do not have any evidence ourselves that USW cause behavioral effects in mice or have any effect on the developing human brain.'

So mouse exposed to proportionately very long periods of ultrasound have some changes to neuronal migration, but it's unclear if there are any behavioral effects. It would be very interesting to repeat these studies in a mouse population that's genetically predisposed to develop "murine autism".

When I was doing obstetrical care, I and the thoughtful colleagues I worked with shared a common suspicion of the complete safety of ultrasound. There have always been small studies in animals suggesting worrisome effects, but it was absolutely clear that for any significant concern in pregancy ultrasound was indicated. I was less convinced of the case for routine dating ultrasounds, but I also recognized that there was no way we were going to avoid those given current practice and litigation risks. I was, and am, very opposed to recreational ultrasound. I knew enough of the history of medicine to worry about "perfectly safe" interventions.

Which is all to say that I'm predisposed to find this study interesting, and I may be giving it undeserved attention. We can expect it to be well investigated.

I suspect if there is an effect in humans, it may turn out to only be true for a genetically vulnerable fetus exposed at a very critical time for unusually long ultrasounds. I would also wonder if rather than creating a new cognitive disorder it biases the nature of neuronal migration dysfunction in the direction of autism rather than some other cognitive disorder pattern.

This study should discourage recreational ultrasound use. I would also be very slighly more reluctant to use ultrasound on a mother with a strong family history of autism or with a personal history of autism.

Update 9/7/06: There's a weird sequelae to this story.

Autism and compensatory reasoning by imagery

[Via FMH]

Many, but not all, of persons with the label 'autism spectrum disorder' do a great deal of visual reasoning. Temple Grandin in particular has written about her own way of problem solving. It's widely assumed that the brain is 'routing around problems' by repurposing visual subsystems to solve language and reasoning problems. The adaptive brain does some things better than conventional brains, and some things less well.

A recent neuroimaging study fills out this picture:

New Scientist Breaking News - How people with autism miss the big picture

Brains scans of people with the condition show that they place excessive reliance on the parietal cortex, which analyses images, even when interpreting sentences free of any imagery. In other people, the image centre appears to be active only when the sentences contain imagery.

The results agree with anecdotal reports that people with autism are fixated on imagery but struggle to interpret words and language. They frequently excel at recording visual detail, but overlook the bigger picture and the context that comes with it.

Researchers led by Marcel Just of Carnegie Mellon University in Pittsburgh, Pennsylvania, scanned volunteers' brains while they were deciding if certain statements were true or false. Some of the statements relied on analysis of language alone, while others could only be understood by considering the imagery they conjured up. "The number 8, when rotated 90 degrees, looks like a pair of spectacles", for instance, needs both arithmetic interpretation and visualisation of the rotated number.

Just says that the observed over-reliance on the parietal cortex might have arisen to compensate for poor brain connections to the prefrontal cortex, which interprets language (Brain, DOI: 10.1093/brain/awll64)...

I'd like some evidence based recommendations on how to teach reading to someone who problem solves with the parietal cortex ...

Create a lightweight screen reader in OS X

[This is a complete rewrite of my original post, because the initial post was misguided.]

Once upon a time if you wanted a reading aide for a child with learning disabilities you could invest hundreds of dollars in complex applications that were slow, quirky, unreliable, hard to use, and difficult to integrate into real world behaviors.

Now, if you have a Mac that can run OS X 10.3 or later, you can create a de facto reading aide that's available everywhere, from your web browser to your word processor to your PDF viewer (Preview or Acrobat). It works the same way in all of these applications -- highlight the text, type a shortcut, hear the word. (Children with motor disabilities can use OS X accessibility features to help with shortcut key use.)

You say you'd never heard of this? Well, it's not advertised. Even I (geek, special needs parent, etc) hadn't put the pieces together until now -- despite having played with this once. It turns out to be easy to do if you know the path to follow.

First, you must avoid the misleading alternative paths. OS X Tiger (10.4) includes screen reader services for visually impaired persons (VoiceOver). It's not appropriate as a reading aide however, it's too complex and designed for a very different function. Alternatively the 'services' options available for modern OS X applications (Cocoa based) includes an obscure command to read highlighted text, however the user interface is extremely awkward, shortcut key assignment is buggy in 10.3, and it doesn't work in Firefox (not Cocoa), Acrobat or Microsoft Word.

What you need to do is enable text-to-speech; it's disabled by default.

You can read the directions in the above link, or follow along here. Go to the System Preferences and look for the Speech icon (see below if this is grayed out). Click on it.

[This is from Tiger, OS X 10.4. The layout in 10.3 is a bit different but it works just as well.]

You'll probably see the Speech Recognition tab, but click on Text to Speech. The only one you want is 'Speak selected text when the key is pressed'. You'll be asked for a shortcut key.

I typed Option-S to get this. So far it works, though it's so simple there's a risk I might have change it.

Double key combinations are less likely to have conflicts, but they (Option-Control-S for example) are harder for some children to type. I may put a special mark on the option button as well as it's easy for the child to type Cmd-S (save menu) instead. If I change the shortcut combination I'll update this post.

Now if a child or adult is reading and finds a word he or she can't read the sequence is:

1. Click twice to select word or click and drag (if you extend the selection by triple-clicking or dragging all words selected will be read).
2. Hold the option key and tap the S key. The word is read.

PS. You can't select this preference, it is grayed out: If the preference is not available then this user has a 'managed account' and their privileges have been restricted. Annoyingly, even 10.4 does not allow one to enter an Admin username and password and get access to the preferences. You have to logout of the user account, login as an Admin, escalate user privileges, login to the user account, make the changes, logout from the user account, switch to Admin, and restrict user privileges again. I assume 10.5 will fix this ...

Update 7/31: There's definitely a bug with this functionality. I thought it was OS X 10.3 specific, but it happens with 10.4 too. I think it happens more often with slower machines. The OS seems to "miss" the keystroke. My son has learned to hold the option key and tap the S several times until the word is spoken. After the first trial it works better. The 10.4 "voices" are better than 10.3.

Reading exercises for older novice readers: ESL (English as second language)

This is yet another example of intelligence amplification by Google.

I'd been wondering where I could find readable texts for an older novice reader. My son reads at a first grade level, but his interests are age appropriate. There's not much that combines the right reading level and topic.

On a whim I typed "reading exercises" into Google. The first hits I got back were for teaching English as a second language (ESL), including this overview.

Duh. Of course, obvious in retrospect.

I'll report how well these work with the OS X word reader services and Safari.

Update: Well, the good news is I figured out how to create a lightweight OS X 10.3 reading tool by assigning a keyboard shortcut to the Safari-compatible OS X speech service. The bad news is the ESL texts I found were awful. I suspect there's much better stuff locked on Chinese web sites, but I'd need to read Chinese. I've gotten another idea though, and it might be a good one. More to say if it works ...

CHARGE: an ambitious study of autism seeking causal agents

I'm not sure what to make of this. It sounds exceedingly ambitious, but do we really have a good enough definition of the disorder to do this kind of study? Maybe they figure by the time it really gets going we'll have better genetic markers to use for inclusion criteria. It will likely be many years before the study yields results.

Environ Health Perspect. 2006 Jul;114(7):1119-25. The CHARGE Study: An Epidemiologic Investigation of Genetic and Environmental Factors Contributing to Autism. Hertz-Picciotto I, Croen LA, Hansen R, Jones CR, van de Water J, Pessah IN.

.... In light of major gaps in understanding of autism, a large case-control investigation of underlying environmental and genetic causes for autism and triggers of regression has been launched. The CHARGE (Childhood Autism Risks from Genetics and Environment) study will address a wide spectrum of chemical and biologic exposures, susceptibility factors, and their interactions. Phenotypic variation among children with autism will be explored, as will similarities and differences with developmental delay. The CHARGE study infrastructure includes detailed developmental assessments, medical information, questionnaire data, and biologic specimens. The CHARGE study is linked to University of California-Davis Center for Children's Environmental Health laboratories in immunology, xenobiotic measurement, cell signaling, genomics, and proteomics....

Note that when they say "environmental" they're talking about "expression may be influenced, in some cases strongly, by the prenatal and early postnatal environmental milieu". I don't know what they mean about "early postnatal". Do they mean months or years? My guess is they're looking a the first few months of life.

They definitely have enough buzzwords, I'll cross my fingers and hope they can stick with the project.

Increasingly sophisticated fraud a threat to special needs adults?

Special needs adults are going to be targeted by increasingly sophisticated fraud. Our community needs to think about how to respond.

A deluge of research on the genetics of autism

My online blog reader (bloglines) regularly checks the RSS feed I set up on PubMed to monitor autism genetics. Today I got caught up after a missing a few weeks. Lord, what a deluge. There must be forty articles, including:

• discussion of animal models for autism (how else to find out if deep brain stimulation would help?)
• Pten gene deletion in the mouse activates a pathway that produces disordered neurons and dysfunctional social relations (did you say ... animal model?)
  
• Yep, Pten might give us an animal model ...
• A good review (from last year?)
  .... There is no single biological or clinical marker for autism, nor is it expected that a single gene is responsible for its expression; as many as 15+ genes may be involved. However, environmental influences are also important, as concordance in monozygotic twins is less than 100% and the phenotypic expression of the disorder varies widely, even within monozygotic twins. Multiple susceptibility factors are being explored using varied methodologies, including genome-wide linkage studies, and family- and case-control candidate gene association studies. This paper reviews what is currently known about the genetic and environmental risk factors, neuropathology, and psychopharmacology of autism. Discussion of genetic factors focuses on the findings from linkage and association studies, the results of which have implicated the involvement of nearly every chromosome in the human genome. However, the most consistently replicated linkage findings have been on chromosome 7q, 2q, and 15q. The positive associations from candidate gene studies are largely unreplicated, with the possible exceptions of the GABRB3 and serotonin transporter genes. No single region of the brain or pathophysiological mechanism has yet been identified as being associated with autism. Postmortem findings, animal models, and neuroimaging studies have focused on the cerebellum, frontal cortex, hippocampus, and especially the amygdala. The cerebello-thalamo-cortical circuit may also be influential in autism...
• the usual mixture of articles pounding more stakes into the undead heart of the MMR/thimerasol mercury meme ...

The hounds are lusting for the fox, but there's much confusion ahead ... A mouse model for autism would be a huge boon ...

Teaching special needs children to ride a bicycle: the bike camp

The web site for this bicycle camp is excellent:

Learn How to Ride a Bicycle at Lose The Training Wheels.org

One of the pieces for us this summer is a "Kids on 2 Wheels, Inc." week-long bike "camp" in River Falls, WI next week. (One and a half hours each day at the bike camp, 2 hours in the car!) We are hoping our son, Brandon, will realize a life-long dream and master riding a 2-wheel bike. I'll give you a review later this summer. There are great tips for teaching your child to ride at:

I've had some success using more traditional approaches, but it's been touch and go. It's hard to be patient enough, and to come up with the right mix of incentives. I found one area where the combination of packed earth, grass, and slope allowed the children to steer into terrain that gradually slows the bicycle ...

These people use modified two wheelers that look incredibly stable -- big angular momentum in the front wheel, easy to touch down. A wonderful web site and resource.

Science and the alternative: Autism and immunization

Years ago, my wife and I wrote an article for the Journal of Family Practice (then a respectable academic journal) called Science and the Alternative. The point of the article was that it's hard to beat Science as a foundation for action. The results of internally consistent models that survive testable predictions are far from omnipotent, but science is light years ahead of every other method humans have used for understanding our universe.

That's why this is sad:

BBC NEWS | Health | Jabs link to autism 'dispelled'

... Jackie Fletcher, from campaign group Jabs, a support network for parents who believe their children have been damaged by vaccines, said the study still did not prove there was not a link.

"What we need, and what we have always called for, is a full and open review into the link so we cann establish once and for all what the truth is."

It's over Jackie. Give it up. When belief persists in the presence of contrary evidence it shades into delusion. Sure there's a chance that all the studies are wrong and that there's some connection between immunization and autism -- but after so many negative studies that's not fertile territory. Jackie and the immunization-autism die-hards are stuck panning for gold in a stream gone dry, surrounded by a vast and promising land. This persistence is harming our autistic children by draining resources and attention, not to mention harming all children by discouraging immunization.

Credit to my medical school for nice work, probably done on a shoestring budget:

... Mercury-based vaccines and MMR jabs do not lead to an increased risk of autism, a Canadian study says.

McGill University Health Centre looked at patterns between the development disorder and jabs in 28,000 children, the Pediatrics journal reported.

They found autism rates were higher in children given jabs after thimerosal was eliminated from vaccines and after MMR vaccination coverage decreased.

...This has come at a time when autism rates have been rising across the world.

Before the 1980s, one in 2,500 children was diagnosed as autistic, a developmental disability that affects the way a person communicates and interacts with others. Now the figure is closer to one in 250.

... The team found that after thimerosal was phased out in Quebec in 1996, the autism rate rose from 59.5 per 10,000 to 82.7 per 10,000.

And after MMR coverage fell in the late 1990s, the rate rose to 102.5 per 10,000 compared to 40.6 in the late 1980s.

Lead researcher Dr Eric Fombonne said: "There is no relationship between the level of exposure to MMR vaccines and thimerosal-containing vaccines and rates of autism.

.... And he added the rise in autism rates was likely to be caused by a broader definition of autism and greater awareness of the disorder...

I wish, I hope, I pray the Autism Society of America will read this study and drop their own immunization obsession. Inflexibility is a common autistic trait, now the parents who've fought this campaign can teach by example.

Why is autism increasingly diagnosed? Well, in Minnesota at least, you don't get much help in school if you're diagnosed with "mental retardation".

Renaming accounts for a lot of the growth in the diagnosis of "autism" and seemingly related disorders. There may be other causes, but we need much better science to characterize the atypical and/or dysfunctional brain. The first task in understanding is classification, and we have never had a reliable system for classifying neurodevelopmental disorders like autism and its siblings. The good news is that the science is coming.

State of Minnesota Personal Care Assistance Guidebook

PCAs are available in Minnesota for children with cognitive and motor disorders. parents can work with a home health agency (traditional) or run their own program (Consumer directed/PCA choice).

Although we use the program, we have had surprisingly little information about how it works or what our options are. This web site seems potentially interesting. The state seems to favor the consumer directed model -- which is more work for parents.

PCA Program Consumer Guidebook

The PCA Program Consumer Guidebook has been developed to provide information about Minnesota’s Personal Care Assistance (PCA) program and the many options you have. DHS strives for a consumer directed service model so YOU make decisions about your PCA services.

Seems there's a business opportunity for outsourcing some of the work of the consumer directed model.

Healing brains, healing minds - lessons for autism

In his introduction to Grandin's 'Thinking in Pictures', Oliver Sacks writes: "What is remarkable is that Temple, now in her fifth decade, has developed some genuine appreciation of other people and other minds ..."

New cognitive capabilities in late middle-age. We're not used to thinking that way. We think of brains pretty much peaking around age 25, then entering a long decline offset by learning and experience. That may be so for neurotypical brains, but what about the injured brain? Might healing take place into the third, fourth and fifth decades?

A tantalizing thought. It's long been noted that the "personality disorders" (the term is archaic, it's likely they are fundamentally developmental disorders affecting social functions) tend to improve in middle-age. Is the brain continuing to route around damaged subsystems, slowly healing over time?

Other clues have emerged from brain injured patients who show a slow healing over years and decades, migrating from stimulus response to communication attempts to social interaction to self-awareness ... (emphases mine)

Studying a Brain Healing From 19 Lost Years - New York Times

... Mr. Wallis, 42, wears an open, curious expression and speaks in a slurred but coherent voice. He volleys a visitor's pleased-to-meet-you with, "Glad to be met," and can speak haltingly of his family's plans to light fireworks at his brother's house nearby.

For his family, each word is a miracle. For 19 years — until June 11, 2003 — Mr. Wallis lay mute and virtually unresponsive in a state of minimal consciousness, the result of a head injury suffered in a traffic accident...

... In a paper to be published on Tuesday, researchers are reporting that they have found strong evidence that Mr. Wallis's brain is healing itself, by forming new neural connections since 2003.

The paper, appearing in The Journal of Clinical Investigation, includes a series of images of Mr. Wallis's brain, the first such pictures ever taken from a late-recovering patient...

..."We read about these widely publicized cases of miraculous recovery every few years, but none of them, not one, has ever been followed up scientifically until now," said Dr. Nicholas Schiff, a neuroscientist at Weill Cornell Medical College in Manhattan and the senior author of the new imaging study...

... His mother, Angilee Wallis, said: "He is starting to learn things now. That right there is new."

In recent weeks, she said, he has also shown hints of self-awareness, alluding to his disabled condition for the first time.

... Terry Wallis was lanky 19-year-old back in 1984, with a gift for elaborate pranks and engine work, when he and two friends skidded off a small bridge in a pickup truck, landing upside down in a dry riverbed. The family never found out exactly what happened, and the crash left their son alive but unresponsive, breathing but immobilized, there but not there, his father said.

Terry Wallis showed no improvement in the first year, and doctors soon pronounced him to be in a persistent vegetative state and gave him virtually no chance of recovery, his parents said.

About 52 percent of people with traumatic wounds to the head, most often from car accidents, recover some awareness in the first year after the injury, studies find; very few do so afterward.

But at some point after his accident, probably within months, Mr. Wallis, a mechanic before his injury, entered what is called a minimally conscious state, Dr. Schiff said....

... In 2004, Dr. Schiff contacted the family, asking if they would allow their son to be studied. He helped arrange to have the Wallises flown to New York in April of that year, and again 18 months later, for brain scanning. A research team from New York, New Jersey and New Zealand spent more than a year analyzing the results, comparing them to images from healthy brains and from another minimally conscious patient who had not recovered.

Using a novel technique that allows researchers to gauge the direction and density neural fiber growth, they saw evidence of new growth in the midline cerebellum, an area involved in motor control, as Mr. Wallis gained strength and range in his limbs. Another area of new growth, located along the back of the brain, is believed by some experts to be a central switching center for conscious awareness.

The daily exercises, the interactions with his parents, his regular dose of antidepressant medication: any or all of these might have spurred brain cells to grow more connections, the researchers said...

There's a growing consensus that there are 'step functions' between coma and what we consider "full" consciousness. Arousal precedes communication precedes self-awareness. We are beginning to identify a few of the key subsystsems [1] that enable "selfhood". All fascinating, but this story also strengthens the case for decades long healing of injured brains, with improvements well into middle-age.

What are the lessons for autism and other developmental disorders? If we consider these as profound disorders of brain development, with a clinical presentation that is the result of injury and and the healing response to injury, is it not reasonable that we should see healing well into adulthood and middle-age? If we take this approach, how would we change management of autistic adults? Might those who are quite disabled at age 20 be able to find work at age 30? There's much research to be done, and little money to pay for it. Perhaps we can interest Mr. Buffett ...

[1] An eccentric genius I once knew (college roommate) told me @1981 that consciousness was mediated in part by components of the brain speaking to themselves through muscle and action. He was also into 10-12 dimensional physics around the same time. He had quite a long healing period himself, but that's another tale.

PS. The NYT journalist is perceptive and sympathetic, pointing out that Mr. Wallace's family has gained little from their media moments and mentioning the existence of a trust fund seeking donations.

Update: I forgot to comment on the antidepressant use.

A good book for siblings of difficult children

Siblings of difficult children grow up with quite a bit of stress. This excellent book can sibs understand that anger and aggression may have roots in anxiety and sadness: (review is mine)

Amazon.com: Peace And Pancakes: Books: Anne M. Picard

...I'm told this book was self-published, the first-time author couldn't find a publisher. We live in an odd world, this is a terrific work. Publication should have been a no-brainer.

The book tells the story of an angry giant who terrorizes the forest. A young dragon learns the lessons of patience, listening, and seeing with the heart. Finally he confronts the giant, and wins the day with wisdom and pancakes.

The illustrations are excellent, the book comes with a CD as well, suitable for storing on an iPod.

Training exotic animals, husbands and difficult children

I was a bit open mouthed when I read this story. It took us years to develop a similar approach to working with special needs children.

What Shamu Taught Me About a Happy Marriage - New York Times

...The central lesson I learned from exotic animal trainers is that I should reward behavior I like and ignore behavior I don't. After all, you don't get a sea lion to balance a ball on the end of its nose by nagging. The same goes for the American husband.

Back in Maine, I began thanking Scott if he threw one dirty shirt into the hamper. If he threw in two, I'd kiss him. Meanwhile, I would step over any soiled clothes on the floor without one sharp word, though I did sometimes kick them under the bed. But as he basked in my appreciation, the piles became smaller.

I was using what trainers call "approximations," rewarding the small steps toward learning a whole new behavior. You can't expect a baboon to learn to flip on command in one session, just as you can't expect an American husband to begin regularly picking up his dirty socks by praising him once for picking up a single sock. With the baboon you first reward a hop, then a bigger hop, then an even bigger hop. With Scott the husband, I began to praise every small act every time: if he drove just a mile an hour slower, tossed one pair of shorts into the hamper, or was on time for anything.

I also began to analyze my husband the way a trainer considers an exotic animal. Enlightened trainers learn all they can about a species, from anatomy to social structure, to understand how it thinks, what it likes and dislikes, what comes easily to it and what doesn't. For example, an elephant is a herd animal, so it responds to hierarchy. It cannot jump, but can stand on its head. It is a vegetarian...

...On a field trip with the students, I listened to a professional trainer describe how he had taught African crested cranes to stop landing on his head and shoulders. He did this by training the leggy birds to land on mats on the ground. This, he explained, is what is called an "incompatible behavior," a simple but brilliant concept.

Rather than teach the cranes to stop landing on him, the trainer taught the birds something else, a behavior that would make the undesirable behavior impossible. The birds couldn't alight on the mats and his head simultaneously.

At home, I came up with incompatible behaviors for Scott to keep him from crowding me while I cooked. To lure him away from the stove, I piled up parsley for him to chop or cheese for him to grate at the other end of the kitchen island. Or I'd set out a bowl of chips and salsa across the room. Soon I'd done it: no more Scott hovering around me while I cooked.

I followed the students to SeaWorld San Diego, where a dolphin trainer introduced me to least reinforcing syndrome (L. R. S.). When a dolphin does something wrong, the trainer doesn't respond in any way. He stands still for a few beats, careful not to look at the dolphin, and then returns to work. The idea is that any response, positive or negative, fuels a behavior. If a behavior provokes no response, it typically dies away.

Neurotypicals learn by reward and "punishment", though the punishment might be as mild as a disapproving stare, a raised eyebrow, or saying "ONE". Things are rather different for some special needs children (the best written guide is 'The Explosive Child').

Negative reinforcers are weak tools in these children, they may produce anxious aggression as often as positive response. Rewarding small steps towards the desired behavior may be the only real option. It's like rowing with one air -- hard, tiring work -- but it can move the boat.

Not that there are miracles! It's hard to practice LRS when a bystander is being body slammed ...

Update 7/10: These ideas have been around for a while ...

21st century employment for persons with autism and other cognitive disabilities: The Mechanical Turk

Emily has been reading 'Send In the Idiots', an exploration of several high functioning adult autistic persons by an insider. As she described the work they can do, and the limitations they face, I thought about one of the more fascinating recent innovations: Amazon Mechanical Turk.

A system for defining tasks, complex or modest, then distributing them to bidders, seems to have obvious applications to "high and low" functioning persons with cognitive and/or social disabilities. I know of a gentleman with fairly severe cognitive disorders but extraordinary visual processing capabilities. Such "savant-like" abilities are not sufficient to retain conventional employment, but they might be well suited to some of the tasks sold on the 'Mechanical Turk' sites. High IQ persons with autistic disabilities could have a quite wide range of tasks to bid on and execute.

eBay may play a similar role for a group of persons who, for one reason or another, cannot find or do not wish conventional employment.

Grandin again: Career advice for autistic teens and adults

Yet another book by the rather prolific Ms. Grandin, with co-authors: Amazon.com: Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism: Books: Temple Grandin,Kate Duffy,Tony Attwood. I think the audience is mostly parents of teenagers, but I'd like to take a look at this for a younger child.

Teaching empathy to autistic children

Temple Grandin, a good source of ideas on autism, writes that she only became capable of comforting others, or of appreciating the needs of others, when she was able to identify her needs and comfort herself.

This is the root of empathy. It is why, for example, strong children don't routinely hit weaker children. So if one needs to manage hitting problems with autism, then empathy seems a possible starting point. It would help, of course, if there was any data.

There's precious little. The best I've found is this 2004 literature review by an occupational therapist. It's the only starting point we have.

Best Practice Guidelines: Evidence Based Practice Information Sheet for Occupational Therapists Shanna Phelps, December 2004

....Summary of the Evidence

The evidence shows that children with Autism lack empathy. Teaching empathy to children with autism has been successfully done using a two-part modeling system. There has been a lot of research done on autism and empathy and only one model for Occupational Therapy has come from it. The supporting evidence has shown learning procedures done on children with autism that may have facilitated an empathetic response.

Implications for Consumers

Children with autism can learn skills towards empathizing from a two-part model system in an Occupational Therapy Pediatric Clinic. Occupational Therapists can teach such skills to children with autism, (i.e., recognizing facial expressions, pretend-play, and role playing) with a two-part model. It is still to be determined whether peer modeling can be a successful tool in teaching children with autism empathetic behavior.

Implications for Practitioners

There has not been enough research done on how OT's can intervene and teach children with autism to show empathy. There needs to be more research done on the two-part modeling system, introduced by Pepperberg and Sherman. This is an area that has potential for growth in Occupational Therapy practices.

Implications for Researchers

* More experimentation needs to be done in this area. The research is out there but the intervention plans have not yet been tried.
* The areas of empathy need to be broken down and put into practice and used to strengthen the social skills in children with autism. (i.e., identifying facial expressions, pretend play, identifying with peers, role play etc.).

Pivotal response training: ABA in the real world

Google scholar has some articles on "pivotal response training" which has been described as "applied behavioral analysis" in the real world -- something parents can do with children.

Teaching reading to autistic children: a limited literature

A PubMed search returns 13 references. I played with a few variations and sometimes did a bit better sometimes worse.

A Google Scholar search is far more useful. Most of these references appear to be experience based rather than research based, but better than nothing.

Teaching reading to autistic children: whole word approach

The research literature is pretty clear that phonics works best for teaching reading to normal children. There's little or no good data on how to teach reading to autistic children.

Temple Grandin favors a phonics approach. This article, unfortunately pdf only, favors a whole word approach. Your mileage will vary:

Teaching Students With Autistic Spectrum Disorders to Read: A Visual Approach Leslie Todd Broun. Council for Exceptional Children. Vol 36n4 2002.

Teaching autistic children - Temple Grandin

In our case we've reached a hard wall in terms of teaching reading. This essay by Temple Grandin (thanks be to her) doesn't add any arrows to our quiver, but it summarizes a lot of things we've learned. It's a great reference for teachers and parents.

Welcome To Alaska

A friend's son is celebrating his high school graduation. They included in the party invitation a short essay by Emily Perl Kinsley called

Welcome To Holland

I am often asked to describe the unique experience of raising a child with a disablility---to try to help people who have not shared the experience to understand it, and to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation--to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's David. The Gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant announces, 'Welcome to Holland.' 'Holland?' you say. 'What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy...

It really is a useful and gentle orientation to give friends and family.

Destinations may vary however. In our case, we were expecting the Netherlands, would have welcomed Florence, but landed in Fairbanks. In winter. And the Polar bears were hungry.

There is much to say in favor of Alaska, however. The Polar bears encourage a heightened state of alertness, and the howling blizzards cleanse the soul. The view can be spectacular, particularly in the context of a particularly challenging ascent.

Achieving progress

How does one measure progress with special needs children? Move the goalposts.

In other words, wherever you are, revise your goals so the current state represents progress. It's better to choose a new measure rather than simply shrinking an old one, but heck, you do what you need to do.

In the real world it often is true, though illogical, that real progress follows the fraudulent sort. Corporations do this all the time; a product that's 18 months late to market is always redefined as a great success. This becomes true more often than you'd think.

So it is with children. Be creative. Find a metric that allows you to declare victory. Then celebrate. Then find another one ...

Diverse minds - why are there so many "defective" brains?

Are "defective" brains the price humanity pays for an actively evolving community of diverse minds? See - Gordon's Notes: A diversity of minds: are humans less alike than we imagine?

The case against corporal punishment - revisited

Gordon's Notes: Using pain to prevent secular humanism is really about corporal punishment in general. It's very relevant to the care of special needs children, who may not respond in expected or predictable fashions to the usual parenting approaches.

Minnesota Special and Sled Hockey: 2006/2007 Season

The MN Sled Hockey association had a beta trial last fall, and they're read for a full season:

Minnesota Special and Sled Hockey: Minnesota Sled Hockey Web Site

The Minnesota Sled Hockey Association has a web site! They're taking registration info for the 2006/2007 season.

Great group with great leadership. (No comments on the photographer, that was me :-).

Adaptive ballet

I'm pretty familiar with adaptive sports, but not with adaptive ballet. The world of ballet has always seemed fundamentally harsh and cruel -- no place for an "imperfect" child. In this case a therapist found a way around the cruelty of the ballet ...

Given a Chance to Be Little Ballerinas, and Smiling Right Down to Their Toes - New York Times By COREY KILGANNON

With its practice bar, mirrored walls and lush orchestral music, the small dance studio in Bayside, Queens, seems like countless other ballet schools that nurture the dreams of little girls.

... this studio holds one special class a week for dancers whose movements do not exactly exhibit the refined control of a prima ballerina. There are no lithe leaps, perfect pirouettes or pointed toes here. Most girls cannot walk or stand, much less make a shallow curtsy. Their crutches and walkers lie nearby and their customized ballet slippers are stretched over leg braces.

The eight little ballet students, who have cerebral palsy and other debilitating physical conditions, are assisted in class by teenage volunteers with strong healthy bodies and infinite patience. The teacher is Joann Ferrara, a physical therapist who owns and runs Associated Therapies, where most of the girls go for treatment.

... "Every little girl wants to be a ballerina, and my daughter wanted to know why she couldn't," said Maria Siaba, whose daughter Veronica, 7, is in the class. "I would bring her into a ballet school and they said, 'We can't accommodate her.' Outside, I'd have to explain to her that she couldn't do what all the other girls are doing."

For an hour a week, Veronica and seven other girls from Queens escape a world plagued by awkward physical motion and enter a room where elegant music is played and they get a taste of movement that is graceful, smooth, supple and refined. Ms. Ferrara teaches only the basics of ballet. The girls do not perform full pliés or pirouettes, and they are lifted for leaps...

... "I just want them to feel the sheer joy of moving and to be proud of themselves," Ms. Ferrara said. She began the dance class three years ago after hearing repeated laments from the families of girls she treated. "The parents all said their daughters wanted to take ballet like all the other girls, but no ballet schools would accept them," she said.

She recruited a group of teenagers to assist the dancers and paired them up. Most pairs have been together ever since....

.... The girls had their annual recital last Sunday in the auditorium of the Mary Louis Academy in Jamaica Estates. Backstage, assistants were pulling ballet slippers over the bulky plastic sheathing and hinges of leg braces, and helping the girls put on white tights and pink tutus. Pink fuzzy tiaras were adjusted and pink tambourines and fairy wands were distributed. The dancers were bursting with excitement as they checked their makeup and hair in the mirror.

Monica resolved that during the recital she would try to stand for the first time in front of her dad, John Chaffardet, who was in the audience.

Veronica sat in the lap of her helper, Christina Arfsten, 16, of Flushing, and said her favorite ballet was "Swan Lake" because "it's about a girl who works very hard and never, ever gives up."

The audience included some of Ms. Ferrara's other patients, who watched proudly and shed tears of pride, not pity. For the finale, "When You Wish Upon a Star," the dancers held shiny paper stars. When the music stopped, Jessica held hers aloft and yelled, "Yea, we did it."

The audience bathed the girls in cheers as Ms. Ferrara handed each ballerina a red rose. Monica held her rose in one hand and used the other to steady herself with her ribbon-wrapped cane. Heather gently released her and beamed as she stood by herself, held up by applause and her father's quivering smile.

If you're not teary eyed at this point, you have a heart of stone.

Autism reviewed

Update 5/13: Since first writing the post I've kept below, I've realized that the review bothers me.

I think I know why; it's fundamentally superficial, if not supercilious. The reviewer assumes a mantle of perspective and wisdom, but on reflection he seems more haughty than wise. His pretended compassion rings false, his professed admiration of "heroic parents" smells of gratitude for a burden avoided.

The truth is, a child that does not connect with other children can still have deep ties to their loved ones, even if their "snuggles" are fleeting. A child with an obsession for pattern and structure can still be sweet, kind, funny, charming and loving -- and not only to his (or her) parents.

A child who has a full (by human standards) range of emotional capabilities can, in contrast, still be nasty and spiteful. An adult who is autistic can be a good friend and honorable, an adult who is not autistic can be vile. The disorder, or the lack of the disorder, is not the person.

The parent of an autistic children may be heroic (or not), but this is not unique. There is a vast amount of suffering in the world. Only a privileged and lucky few in the wealthy world grow to adulthood without a good serving of pain. Most of us bear burdens, even joyful burdens, and perhaps to bear them well is somehow a credit, but it is not a rare thing.

-- Original Post

The London Review of Books has a fairly extensive discussion of autism. Parts of it are good, parts are confused, parts are bad. It doesn't hang together all that well. Worth a quick scan. He does bring up one of the more interesting questions -- what really is the natural history of autism?

I've a hunch that autistic behaviors wax and wane during a child's life (makes it darned hard to tell what's really helping or hurting) but that many higher IQ autistic children will show significant improvement given a reasonably supportive environment .....

Autism and facilitated communication

A SCIAM blogger has a good review of thestate of "facilitated communication" as a method for helping autistic persons communicate their thoughts and needs. I think respectful and sympathetic skepticism is indicated, along with a willingness to look for benefits, irregardless of actual mechanism. Physicians know many "placebo" treatments are powerful and valuable. The tough question is how much to pay for them.

Pten gene knockout and "autistic" mice

[See the updates. The BBC article is misleading about why this is important.]

Knocking out a gene in mice [suspected to be involved in some autism in humans] creates a wide range of behavioral disorders that bear some resemblance to a part of "autism" in humans:

BBC NEWS | Health | 'Autistic' mice offer gene clue

... The University of Texas team looked at mice where the Pten gene - which has already been linked to other brain disorders - was deleted in the mature nerve cells in the cerebral cortex and hippocampus areas of the brain.

These regions are associated with higher brain function such as learning and memory.

The mice behaved in a number of socially abnormal ways, compared to another group of mice from the same litter.

The genetically altered mice were socially less skilled, being far less likely to be curious about new animals coming into the cage.

... The genetically altered mice were also less likely to build nests or look after their young, but were more sensitive to stressful stimuli, such as loud noises or being picked up.

An examination of their brains showed they also had the increased brain volume and enlarged heads seen in people with autistic spectrum disorders.

At the least this will help us with understanding how the brain works and develops. It is way premature to suggest a connection with autism. Removing the visual cortex also impairs one's social responses; social function is very high level and requires a lot of things to work properly. Any cognitive knockout will impair it.

We should hear fairly soon if there's a subtype of "autism" (whatever that is) that has problems with this particular gene, and whether it somehow affects "mirror neurons" (whatever they are) more than other neurons.

Update 5/4/06: I googled on [Pten Autism]. Turns out there's reason to suspect this gene is related to the 'big head' subtype of autism in humans. The researchers were probably doing the knock out in mice to f/u on that theory. So the connection is more plausible than the BBC report alone suggests. I search on [Pten "mirror neuron"] finds the two terms appearing on news pages together, but as of this moment I didn't get a hit that found a specific mirror neuron problem related to Pten. My old speculation has been that "mirror neuron" depletion might be a secondary response to a deeper defect, a kind of "salvage" or "scavenging" response to a deeper injury.

Update 5/4/06b: Ok, I'm sorting this out. I think this is big news in the near term. If these researchers have created a "mouse model" for a subtype of autism then we've made a big advance in understanding and either preventing or (less likely) treating autism. It's impossible for a non-evil society to experiment on humans, or even primates. We still consider mice to be fair game. They reproduce quickly, their cheap, and we understand their biology very well.