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.