Public response to autistic behaviors - living in a small world

Dave Kolpack's editorial on public responses to disruptive children begins with the phrase "politically incorrect". That's best read as "truth that offends the weak minded". He gets a little better, but not much better.

Emphases mine.

Disruptive behavior by autistic children stirs debate, brings forth conflicted feelings
By DAVE KOLPACK , Associated Press
August 13, 2008

FARGO, N.D. - When a 13-year-old Minnesota boy was banned from church after parishioners complained about his behavior, it exposed a painful truth so politically incorrect that some people feel guilty just saying it out loud: Some autistic children can be annoying and disruptive in public.

The case of Adam Race and others like him has laid bare conflicted feelings — among both parents of these children and other people — over autistic youngsters in public places. And it has stirred debate over how much consideration one side owes the other.

In the case of Adam Race, a judge agreed with a priest in Bertha, Minn., who said the 225-pound teenager was disruptive and dangerous, and upheld a restraining order barring him from services. The priest said Adam spit, wet his pants, made loud noises and nearly ran over people while bolting from the church after services.

Carol Race, Adam's mother, said the congregation's claims were exaggerated. But in a letter to the Star Tribune of Minneapolis, JoAnn Brinda of Crystal, Minn., said the Race family should have shown more consideration for others.

"I don't understand why families that have a challenged child who becomes loud and abusive remain at a service where all participants are quiet and contemplative most of the time," Brinda wrote....

...Similar cases involving people with autism have played out in public recently. A California man was kicked out of a health club for screaming. A North Carolina boy was taken off a plane before takeoff after having a meltdown. A South Carolina girl was ordered out of a restaurant by the town's police chief for crying.

Syndicated radio talk show host Michael Savage added to the furor last month when he charged that doctors and drug companies are overdiagnosing autism, and said, "I'll tell you what autism is: In 99 percent of the cases, it's a brat who hasn't been told to cut the act out." Several major companies pulled their advertising from Savage's show.

Lisa Jo Rudy, who is the mother of an autistic child and writes and consults on autism, said Savage's words were "truly nasty and hurtful." At the same time, Rudy said the talk show host has raised awareness of some of the frustrations of parents of autistic children and the wider public, too.

Rudy said there are times when parents should not put their children in situations where they may be disruptive. "Some of these stories really are the ones where the general public can absolutely identify with the other side of the story," Rudy said.

Jason Goldtrap of Davenport, Fla., said too many people diagnosed with autism are out and about in public because of political correctness. Goldtrap, 40, has two nephews, ages 3 and 21, with autism, and said the older one has become so violent at times that the police have been called.

"I certainly sympathize with all the families who are in this situation," Goldtrap said. "But when we got away from the concept of institutionalization in America, we lost an important element of trying to maintain civility. There is a place for mental institutions."

Goldtrap added: "If it were up to me, he would be in an institution. My brother doesn't agree, and that's his prerogative." He declined to identify his brother, saying, "I don't want to start another argument."

.... Many parents say that their autistic children are largely misunderstood, that they can't help it when they act up, and that they need interaction with the public...

Asperger's tends to run in genetically related families, and it's associated with categorical rigidity and intolerance of disruption. I wonder if Mr. Goldtrap might carry a diagnosis he's unaware of.

I think what we're seeing here is the graying of America. The boomer's are now over in their 50s and 60s, and they're pretty removed from their child rearing days. Now they have little tolerance for normal children, and less for children with disabilities.

Sure it's hypocritical and selfish, but these are primates we're talking about.

As usual, there are no simple answers. Today, while visiting a coffee shop on a regular outing with one of my sons, a staff person pulled me aside. She and a colleague were compelled to tell me how much they loved my son's calm manners, his smile and his quiet charm. They have no idea of his disabilities, it was genuine praise for a "well behaved child" that I gratefully accepted.

They've never seen him meltdown. Probably they never will -- the setting works for him. If they did, then maybe they'd put him in the disruptive autistic-keep-indoors child category. He's still the same person of course.

Another child is often praised for his charm and behavior; but at home he routinely pushes our extreme parenting skills to new limits of invention. I still remember, at a thankfully much younger age, a spectacular meltdown on an airplane ...

Of course I also remember our quite normal daughter awakening after a flight when Mum had left to get a cart -- her shrieks could be heard on incoming flights.

Life's complicated. If you retreat indoors, the children don't get any practice with the real world. You'll never discover that seemingly utterly insane road trips work inexpicably well for one set of kids.

On the other hand, if your child hits the wall in a public setting, you may have to explain to the nice officer why you're physically restraining a screaming child. This is even more fun if an adopted child doesn't actually resemble their parent; mercifully we've somehow missed this experience so far. In the days that sort of thing happened to me people were slower to call the police than I'd have expected.

We don't go to church. We never did find a place that would accept both me (effectively an atheist) and our kids. The intellectual churches tend to have gray haired parishioners who like things quiet, the loud and tolerant churches can't deal with an atheistic snake in the grass.

It's a small world, and getting smaller all the time. Do your best, and if your son or daughter goes ballistic near me you'll have at least one sympathetic bystander.

The Tropic Thunder boycott

Here's the email from the Down Syndrome of MN executive director:

By now you may be aware that Tropic Thunder, a film which depicts people with developmental disabilities in a derogatory and disrespectful manner, will open in our area tomorrow evening.

Despite aggressive attempts to get Dreamworks-Paramount to modify the offensive content, the film with its offensive and hurtful stereotypes about people with disabilities has debuted intact. The Down Syndrome Association of Minnesota, therefore, joins the National Down Syndrome Congress, National Down Syndrome Society, Special Olympics and Arc of the United States and other disability organizations in calling for a boycott. One of the best ways to send a message to Hollywood is to cut into their ticket sales.

Considering what we ask, we must be completely honest. While trusted members of our community were allowed to preview the complete film, all that is available generally is a promotional trailer. That brief glimpse leaves a nasty taste, but to be fair is not the full movie.

We have elected to trust our colleagues who have seen the full film. You can read the reaction of one, journalist Patricia Bauer, on her blog at www.patriciaebauer.com Based on what Patricia says and the reports of other leaders in both the Down syndrome and larger disabilities community, we reiterate our call for a boycott of TropicThunder.

Special Olympics USA has taken a bold lead on this issue calling for the elimination of the term "retard” ­ or the R-word as they put it ­from popular language. Language is a powerful tool. Individuals with developmental disabilities are not "retards"; they are our sons, daughters, friends, employees, neighbors, classmates; people deserving respect.

It is quite easy to avoid the film, however, if you agree we need to make a loud and clear statement ­ about Tropic Thunder and the larger issue of disrespectful, prejudicial language ­we urge you to both join the boycott and spread the word among your friends, neighbors and co-workers.

Finally, I would direct your attention to a short video produced by Will Schermerhorn of [Blueberry Shoes Productions]. This very short video was put together for the Arc of Northern Virginia. It is a beautiful counterpoint to “Tropic Thunder”.

Kathleen Forney
Executive Director
Down Syndrome Association of Minnesota

Patricia Bauer has a good sample of responses to the movie, both those defending it as a parody of Hollywood and those offended by the "R" word.

Probably the best comparison is the use of the "N" word in film -- a matter of debate when used by black directors; offensive when used by white directors. By that metric the movie is at best gratuitously offensive, at worst cruel.

Schizophrenia revelations - implications for autism

Following close on the heels of findings that major gene scramblings are common in "normal" brains comes more startling news about brain disorders:

Gene-Hunters Find Hope and Hurdles in Schizophrenia Studies - NYTimes.com

... The variants discovered by the two groups, one led by Dr. Kari Stefansson of Decode Genetics in Iceland and the other by Dr. Pamela Sklar of Massachusetts General Hospital, are rare. They substantially increase the risk of schizophrenia but account for a tiny fraction of the total number of cases.

This finding, coupled with the general lack of success so far in finding common variants for schizophrenia, raises the possibility that the genetic component of the disease is due to a large number of variants, each of which is very rare, rather than to a handful of common variants...

... The new focus on rare mutations suggests that natural selection is highly efficient at removing schizophrenia-causing genes from the population. Despite selection against the disease, according to this new idea, schizophrenia continues to appear because it is driven by a spate of new mutations that occur all the time in the population....

“This may be the case in other brain diseases, too,” Dr. Goldstein said, “because successful cognitive functioning is a highly complex system and there are many independent ways to take it down.”

The search for common variants in schizophrenia, however, has not been very successful so far, though not for want of trying. There have been more than a thousand studies, implicating 3,608 genetic variants.

But when all the data are pooled, only 24 of those variants turn out to be statistically significant, according to an analysis in the current issue of Nature Genetics by a group led by Dr. Lars Bertram of Massachusetts General Hospital...

I read this as consistent with recent literature telling us that the human brain has been undergoing rapid evolution for a few thousand years, perhaps with an unusually accelerated mutation rage and high selection pressures.

Rapidly evolving organs are often fragile things -- like a car slapped together in a rush. Thousands of thousands of things can go wrong. Some are manageable, others produce schizophrenia and perhaps autism.

The bad news is we were hoping gene studies would identify common genetic mechanisms; we could then use these to characterize disease subtypes, better evaluate therapies, and identify new drug targets. Now that door seems to have shut. We have to look further up the bioinformatics chain for common functions that meds could act on, and we may fear that they'll be hard to find.

Autism and ADHD are not so different after all

More evidence that our current categorization of early onset cognitive disorders needs a rewrite.

Evidence for overlapping genetic influences on aut...[J Child Psychol Psychiatry. 2008] - PubMed Result

BACKGROUND: High levels of clinical comorbidity have been reported between autistic spectrum disorders (ASD) and attention deficit hyperactivity disorder (ADHD). This study takes an individual differences approach to determine the degree of phenotypic and aetiological overlap between autistic traits and ADHD behaviours in the general population.

METHODS: The Twins Early Development Study is a community sample born in England and Wales. Families with twins born in 1994-6 were invited to join; 6,771 families participated in the study when the twins were 8 years old. Parents completed the Childhood Asperger Syndrome Test and the Conners' DSM-IV subscales....

RESULTS: Significant correlations were found between autistic and ADHD traits in the general population (.54 for parent data, .51 for teacher data). In the bivariate models, all genetic correlations were >.50, indicating a moderate degree of overlap in genetic influences on autistic and ADHD traits...

CONCLUSIONS: These results suggest there are some common genetic influences operating across autistic traits and ADHD behaviours throughout normal variation and at the extreme. This is relevant for molecular genetic research, as well as for psychiatrists and psychologists, who may have assumed these two sets of behaviours are independent.

I suspect all clinicians with significant experience with autism are accustomed to children who have features of both ADHD and autism. So no surprises there. Unfortunately, most studies of ADHD or autism focus on "pure" subjects, so they exclude children who have features of both.

That means there's very little research about children with both ADHD and autism spectrum disorder -- we don't know what medications, behavioral or educational interventions are most effective.

These results may justify research on the large number of children and adults who aren't "pure" examples.

Please don't feed the nasty man

Imagine there exists a nasty man of limited insight who's income depends on national attention.

Isn't giving him attention like feeding a bear with a bad tooth? He'll just come back for more.

Lessons from gene deletions affecting learning and autism both

On the one hand, this article annoyed me. It demonstrates the usual confusion between association and causation, and it extrapolates from an exotic genetic disorder to the much larger group of children labeled as "autistic".

The reasoning errors, incidentally are not the journalist's. They come from the researchers. Researchers are as prone to this fallacy as anyone else.

On the other hand, it has some interesting hints. So I'll delete the worst parts, and focus on the interesting hints.

Autism Genes That Control Early Learning: Scientific American

A new genetic analysis of large, inbred Middle Eastern families... pinpointed six new genes that may contribute to autism ....

They report in Science that all of the linked genes are involved in forming new and stronger connections, called synapses, between nerve cells in the brain, which is the biological basis of learning and memory formation...

The researchers studied 88 families in which one or more children had been diagnosed with autism, and the parents of each autistic child were cousins. Marrying second and third—and even first cousins—is not uncommon in the Middle East...s

The team found a total of six mutations affecting genes that had previously not been linked to autism. The mutations came in the form of deletions, where part or all of both copies of the genes were missing in a child with the disorder. All of the genes are known to be involved in parts of the same process: creating and strengthening synapses...

...Walsh says the team believes these deletions—which in most cases found here only remove some, but not all, of the DNA that makes up a gene—may mean that the genes can regain some of their normal function. In fact, some of these genes may just be switched off. "This presents the possibility that in some kids we could get the gene going again without necessarily having to put it back in the brain," he says...

...Walsh notes that many children diagnosed with autism tend to show vast improvement when they are placed in environments that allow them to practice learning repetitively. He says that these activities essentially train the neurons to make up for their lost function.

From a science perspective it's another advance in studying neurodiversity, and it fits in the context that large numbers of "normal" people have significant neuro gene deletions.

From a parent's perspective, I was struck by the idea that these neurons can form connections, but they take a lot of persistence to form. In particular, highly repetive learning.

It's hard to do that kind of teaching in a conventional classroom. It bores most students and teachers to tears. This fits with our experience in trying to teach reading however ...

Guanfacine for ADHD in children with autism -- and a recent literature report

Guanfacine in Children with Autism and/or Intellec...[J Dev Behav Pediatr. 2008] is basically reassuring. Guanfacine substantially improves ADHD behaviors in children with autism and similar cognitive disorders. It doesn't have other behavior score benefits. Side-effects were as expected.

I have a standing PubMed search on Guanfacine because it's a long used medication that was recently found to be an "alpha 2A adrenoceptor". That's making it the subject of extensive research, such as:

• changes in neuronal connectivity
• extended release works well in children and adolescents
• strengthening working memory networks (?)
• better prefrontal cortical regulation of behavior in aging animals (?)
  

Guanfacine (Tenex) is not FDA approved for use in ADHD, but the recent crop of articles expect approval shortly. It has been widely used for several years. Our son has taken it for about 2 years.

The challenge is that this medication will be taken for a very long time by very large numbers of children, often in combination with Ritalin. There are sure to be surprises, both good and bad. We don't know it nearly as well as we do Ritalin.

Games for focal abilities: Set and visual perception

Last week I wrote about focal abilities in the context of cognitive disability, and implications for employment in a distributed world. I was partly inspired by a friend who knew of an autistic child who was very good at the card game "Set":

Be the Best You can Be: Employment for special needs persons – hints from the classification of galaxies

...These [larger] disabilities are often offset by domains of relative, and even, absolute, strength, such as rapid pattern recognition in the card game “Set”, or rapid discrimination of large amounts of visual data. Tasks similar to the Galaxy Zoo classification, but with payment attached, might become an option – in time...

Since Child A has almost savant abilities to locate family members in a crowd, Andrew suggested I try him with "Set" -- a "game of visual perception".

The directions seem complex at first. Players choose groups of 3 cards from a larger set of 12 in which each of four attributes (color, shape, shading, number) are either identical or unique. I wasn't sure my son would get the game.

He saw me practicing as I thought about how to teach this, walked over, and started stamping out sets.

I guess he's played this before.

I'm not sure he's brilliant at Set, but for now he's much better than I am. Unsurprisingly, given his ADHD, he doesn't have much patience for the rules. He prefers to lay out all the cards, and pick out sets without keeping score.

It's great to have a game he can excel at, even though we'll need to be flexible with the rules.

Employment for special needs persons – hints from the classification of galaxies

The  Galaxy Zoo uses humans as “computers”. We’re very good at grouping things by resemblance, so hobbyists are used to group images of galaxies into “types”

... With your help, we've been able to collect millions of classifications, with which to do science faster than we ever thought possible...

…If you're already familiar with basic Galaxy Zoo analysis, click here to read the instructions and click here to take part. Galaxy Zoo 2 will go live in the near future featuring a much more detailed classification system, while further off we plan GalaxyZoo 3 with lots of exciting new data...

One amateur astronomer made an important original discovery.

Some persons on the autism spectrum with a personal interest in astronomy might be interested in the Galaxy Zoo today, but from a special needs perspective I’m mostly interested in where things might go in the future.

There will likely be tasks that humans do much better than computers for at least a few years. A few decades, I hope.

Some of these tasks will be open to people with focal cognitive disability. These disabilities are often offset by domains of relative, and even, absolute, strength, such as rapid pattern recognition in the card game “Set”, or rapid discrimination of large amounts of visual data. Tasks similar to the Galaxy Zoo classification, but with payment attached, might become an option – in time.

Incidentally, the first “computers” were humans. Even into WW II men and women did computational tasks by hand and were known as “computers”. (Engineers, of course, used slide rules until the late 1970s, but they weren’t called “computers”.) So this is a “back to the future” story.

See also:

• Outsourcing your crowd sourcing
• Distributed transcription using Amazon’s Amazing Turk

Does Ritalin specifically target the prefrontal cortex?

I've long been impressed by the unexpected safety of Ritalin (methylphenidate). It's rare for a medication to both alter brain function and have low toxicity, yet many years of use have given us little bad news.

Now FP reports on a study that suggests why Ritalin is both safe and effective for ADHD. It might not the drug we thought it was ...

FuturePundit: Research On Ritalin Mechanism Of Action

... In a paper publishing online this week in Biological Psychiatry, University of Wisconsin-Madison psychology researchers David Devilbiss and Craig Berridge report that Ritalin fine-tunes the functioning of neurons in the prefrontal cortex (PFC) - a brain region involved in attention, decision-making and impulse control - while having few effects outside it.

... Mounting behavioral and neurochemical evidence suggests that clinically relevant doses of Ritalin primarily target the PFC, without affecting brain centers linked to over-arousal and addiction. In other words, Ritalin at low doses doesn't appear to act like a stimulant at all.

Ritalin at lower doses appears to cause the prefrontal cortex (PFC) to be more sensitive to signals coming in from the hippocampus.

When they listened to individual PFC neurons, the scientists found that while cognition-enhancing doses of Ritalin had little effect on spontaneous activity, the neurons' sensitivity to signals coming from the hippocampus increased dramatically. Under higher, stimulatory doses, on the other hand, PFC neurons stopped responding to incoming information. "This suggests that the therapeutic effects of Ritalin likely stem from this fine-tuning of PFC sensitivity," says Berridge. "You're improving the ability of these neurons to respond to behaviorally relevant signals, and that translates into better cognition, attention and working memory." Higher doses associated with drug abuse and cognitive impairment, in contrast, impair functioning of the PFC...

I wonder if this will change thoughts about optimal dosing of Ritalin. I would very much like to see animal models studied to look for tolerance of Ritalin's alleged PFC effects.