Sharing what I have learned supporting two atypical minds from childhood to adulthood.
Wednesday, April 29, 2009
Curious observations about cognitive capability
Alas, transaction logs show that I thought wrong.
On the one hand, I'll have to deal with this not unexpected problem.
On the other hand, I'm impressed by his powers of deception. I choose to consider that a marker of potential unmeasured by IQ.
Sunday, April 26, 2009
Salon – autism is not a disorder
Salon has an article on the autism is not a disorder movement, sometimes called the “neurodiversity” movement. I don’t like to surrender the term neurodiversity, so I’ll call this the “autism is ok” movement.
We’ve been through this sort of thing a few times. Famously, some deaf people resent the use of nerve implants that diminish the appeal of sign language. On another front lesbians and gay men successfully transformed same gender sexual preference from a disease to a trait.
These examples are well known, but there’s a third example that’s been forgotten. In the 1970s it was a fad for a while to consider schizophrenia to be just another worldview; and that the disease was an biased social construction. That idea was, how shall I say, bull poop.
Reality is a lot messier. The term “autism” is an all-but-obsolete category for a wide range of neurologic variations. Many “autistic” persons are absolutely disabled, unable to support themselves in any employment and unable to survive in any world past or present without extensive support. Others are quite successful electrical engineers (sorry, famous example).
I wouldn’t want to render my autistic children “normal”, but I would like to boost one IQ about 50 points and give another child more control over his emotions. The former is unlikely to happen, but we might succeed with the latter. Similarly, we’d like to help another neurotypical child pronounce the “r” sound at the start of words.
In the end, whether you call something a “disorder” or a “trait”, we still try to make life better for the person.
Saturday, April 25, 2009
Combined video chat and remote assist for persons with disabilities
This technique may work for a range of persons with varying cognitive and motor disabilities …
… I wanted to be able to establish a video chat connection to my elderly parents. Since we both use OS X and both have at least one Intel machine I considered iChat and Google Video Chat. I didn’t consider Skype or Yahoo because that would introduce new account issues and because, as best I can tell, Google has the best technology and no worse reliability than Skype or Yahoo…
Used a combination of remote desktop control and Google video chat.
Wednesday, April 22, 2009
Autism and savant syndrome
Shortly after reading of an obsessive audiophile savant (definitely spectrum) I came across an Economist article exploring an old theme -- exceptional abilities in atypical minds...
The original article is "young and smart" smarmy, but I've excerpted the worst of the tangents. What's left is a compilation of interesting anecdotes.The link between autism and extraordinary ability | Genius locus | The Economist
... A link between artistic genius on the one hand and schizophrenia and manic-depression on the other, is widely debated. However another link, between savant syndrome and autism, is well established...
A study published this week by Patricia Howlin of King’s College, London, reinforces this point. It suggests that as many as 30% of autistic people have some sort of savant-like capability in areas such as calculation or music. Moreover, it is widely acknowledged that some of the symptoms associated with autism, including poor communication skills and an obsession with detail, are also exhibited by many creative types, particularly in the fields of science, engineering, music, drawing and painting. Indeed, there is now a cottage industry in re-interpreting the lives of geniuses in the context of suggestions that they might belong, or have belonged, on the “autistic spectrum”, as the range of syndromes that include autistic symptoms is now dubbed...
... A standard diagnosis of autism requires three things to be present in an individual. Two of these three, impairments in social interaction and in communication with other people ... The third criterion, however, is that a person has what are known as restrictive and repetitive behaviours and interests, or RRBI, in the jargon.Until recently, the feeling among many researchers was that the first two features were crucial to someone becoming a savant. The idea was that mental resources which would have been used for interaction and communication could be redeployed to develop expertise in some arbitrary task. Now, though, that consensus is shifting. Several of the volume’s authors argue that it is the third feature, RRBI, that permits people to become savants.
Francesca HappĂ© of King’s College, London, is one of them. As she observes, obsessional interests and repetitive behaviours would allow someone to practice, albeit inadvertently, whichever skill they were obsessed by. Malcolm Gladwell, in a book called “Outliers” which collated research done on outstanding people, suggested that anyone could become an expert in anything by practising for 10,000 hours. It would not be hard for an autistic individual to clock up that level of practice for the sort of skills, such as mathematical puzzles, that many neurotypicals would rapidly give up on.
... Dr Happé has drawn on a study of almost 13,000 individual twins to show that childhood talent in fields such as music and art is often associated with RRBIs, even in those who are not diagnosed as classically autistic. She speculates that the abilities of savants in areas that neurotypicals tend to find pointless or boring may result from an ability to see differences where a neurotypical would see only similarities...
Simon Baron-Cohen, a doyen of the field who works at Cambridge University, draws similar conclusions. He suggests the secret of becoming a savant is “hyper-systematising and hyper-attention to detail”. But he adds sensory hypersensitivity to the list. His team have shown one example of this using what is known as the Freiburg visual acuity and contrast test, which asks people to identify the gap in a letter “c” presented in four different orientations. Those on the autistic spectrum do significantly better at this than do neurotypicals...
... The question of how the autistic brain differs physically from that of neurotypicals was addressed by Manuel Casanova of the University of Louisville, in Kentucky. Dr Casanova has spent many years dissecting both. His conclusion is that the main difference is in the structure of the small columns of nerve cells that are packed together to form the cerebral cortex. The cortical columns of those on the autistic spectrum are narrower than those of neurotypicals, and their cells are organised differently.
The upshot of these differences is that the columns in an autistic brain seem to be more connected than normal with their close neighbours, and less connected with their distant ones...
... Dr Snyder argues that savant skills are latent in everyone, but that access to them is inhibited in non-savants by other neurological processes. He is able to remove this inhibition using a technique called repetitive transcranial magnetic stimulation.Applying a magnetic field to part of the brain disrupts the electrical activity of the nerve cells for a few seconds. Applying such a field repeatedly can have effects that last for an hour or so. The technique has been approved for the treatment of depression, and is being tested against several other conditions, including Parkinson’s disease and migraines. Dr Snyder, however, has found that stimulating an area called the left anterior temporal lobe improves people’s ability to draw things like animals and faces from memory. It helps them, too, with other tasks savants do famously well—proofreading, for example, and estimating the number of objects in a large group, such as a pile of match sticks. It also reduces “false” memories (savants tend to remember things literally, rather than constructing a mnemonic narrative and remembering that)...
... Savant syndrome, then, is a case where the politically correct euphemism “differently abled” has real meaning. The conclusion that should be drawn, perhaps, is not that neurotypicals should attempt to ape savants, but that savants—even those who are not geniuses—should be welcomed for what they are, and found a more honoured place in society.
I don't believe that 30% of autistic persons have "savant abilities". I suspect the journalist just got this wrong, perhaps the study group was made up of high IQ autistic adults. In that group I can imagine the 30% figure is real.
On the other hand I know a boy with a low IQ who has savant-like abilities to identify persons of interest in very large crowds. I keep trying to come up with a business use of his odd talent, but it sure comes in handy finding his prone-to-wander sibling.
In the end there aren't a lot of practical tips from the article, but it reminds us of the extraordinary diversity of mind concealed by our similar bodies. We're still far from understanding all the variations that shade between disability and selective ability, and how these minds develop from childhood through adulthood.
Wednesday, April 08, 2009
Schizophrenia and autism: the connectopathies?
So very different conditions, but both arising from disordered development of neuronal connectivity.
It's not exactly a new idea. I recall the insult "wired wrong" from 40 years ago. It may turn out to be quite wrong, and it's unlikely to have clinical implications for years, but it's still worth tracking (emphases mine) ...
Finding out how the brain is wired | Wired | The Economist
.... Dr Lichtman’s work is the most famous example of the emerging science of connectomics. But it is not the only one. For, just as every organism has a genome (the complete set of its genes, as encoded in its DNA), every organism with a nervous system has a connectome (the complete set of its nerve cells and the connections between them). In practice, of course, a connectome will change over the course of time as new connections form and old ones die. But that does not stop people like Dr Lichtman dreaming of a Human Connectome Project inspired by the success of the Human Genome Project....
...The cerebral cortex—the part of a mammal’s brain that thinks—is composed of 2mm-long units called cortical columns. Winfried Denk of the Max Planck Institute for Medical Research in Heidelberg, Germany, estimates that it would take a graduate student (the workhorse of all academic laboratories) about 130,000 years to reconstruct the circuitry of such a column. But efforts to automate the process are gaining ground.
... The result of all this effort, it is hoped, will be precise circuit-diagrams of brains. The first brains to be mapped will probably have belonged to mice. Besides being cheap and disposable, a mouse brain weighs half a gram and packs a mere 16m neurons. Human brains (1.4kg and 100 billion neurons) will come later, when all the wrinkles have been ironed out in rodents, and proper methods devised to analyse the results. But come they will. And when they do, the most complicated object in the known universe will begin to give up the secrets of how it really works.
Thursday, March 26, 2009
Violence and the natural history of Autism - so what do we know?
Ann Bauer has written four stories about her son Andrew
- July 2005: He's been doing well from age 12 to 17.
- May 2007: Andrew is 19. She tells us that he was misdiagnosed with schizophrenia, and that antipsychotic medications made him violent
- Mar 2008: She’s struggling, and still feels that the antipsychotic medications are responsible for Andrew’s worsening condition.
- Mar 2009: Andrew is dangerously violent, and his mother can’t get help in an emergency.
From Mar of 2009 (emphases mine) …
Ann Bauer on autism, violence | Salon Life
... Andrew started life as a mostly typical child. But at 3 and a half he become remote and perseverative, sitting in a corner and staring at his own splayed hand. Eventually he was diagnosed with high-functioning autism, a label that seemed to explain everything from his calendar memory and social isolation to his normal IQ.We got him into a good program and there was a brief, halcyon phase of near normalcy … from ages 12 to 17… I occasionally even referred to him as "cured."
But in the months before turning 18, Andrew grew depressed and bitter. Huge and hairy -- a young man who grows a beard by twilight -- he suddenly became as withdrawn as he'd been at 4. Many of his old symptoms returned: the rocking and "stimming" (e.g., blinking rapidly at lights), the compulsion to empty bottles of liquid soap. Sometimes he would freeze, like a statue. Classic catatonia, the experts told us...
… When Andrew finally landed at the county hospital, after 10 hours in the circling ambulance and another three in the E.R., I was still looking for a different answer. This wasn't autism. Surely he had a brain tumor, a seizure disorder, or a delusional condition such as schizophrenia. Maybe, on one of his crime sprees, he'd gotten ahold of some PCP.
But the psychiatrist assigned to my son said no. The MRI was clean; the EEG normal. The doctor's specialty happened to be schizophrenia, and he saw none of the signs. Street drugs would have left Andrew's body by now. This was isolation, frustration, hormonal surges, poor impulse control and hopelessness. It was adult autism, the psychiatrist told me: one awful direction it can take…
So what's going on here? What does this mean for parents of children who carry the label “autism”?
Not to much by itself. Andrew’s tragedy is one of hundreds of thousands of stories. It defines boundaries, but how typical is this path?
Well, for that we’d like to have some medical research. Like being the operative word …
Let’s start with the phrase “adult autism”, the term Andrew’s psychiatrist is said to have used. There are thousands of medical articles on DNA findings in autism, but only 7 hits on “adult autism” of which only a Japanese study is mildly interesting.
Okay, so what about a search on “natural history”, the medical term for studies of the progression of a disorder?
Those results are little better. With a few minutes of work I found seven articles over about 40 years in Japan, the US, Sweden, and Turkey. That’s not the same as "seven research studies'”, this set includes at least four reviews! …
- Freeman et al, 1991 – 62 patients studied over 12 years. The abstract isn’t very useful.
- Shirataki et al, 1984 – “… poor outcomes might be due to the particular situation in Japan throughout this study period…”
- Kobayashi et al, 1992. Sort of a f/u to Shirataki, also Japanese. “Although 31.5% had shown marked deterioration during adolescence, 43.2% had shown marked improvement during that period. Possible factors contributing to these results are discussed.”
- Rutter 1970 – Infancy to Adulthood. No abstract, this is too long ago to have one.
- DeMyer et al 1973 – Another one too far back to have an abstract.
- Nordin et al, 1998 – See below
- Korkmaz 2000 – See below
Two of the reviews sounded like they might be worth digging into …
Korkmaz 2000 (Turkey, review) … a gradual overall symptomatic improvement including an increase in adaptive skills is observed in most cases with age. Follow-up studies show that the diagnostic features, the differential diagnosis, and clinical problems of adult autistics differ substantially from that of autistic children… Depression, epilepsy, and behavioral problems such as aggression and agitation may be major clinical problems during adolescence…
Nordin et al, 1998 (Sweden, review) … The majority of children with autism show deviance and socially or psychiatrically handicapping conditions throughout life. Only a small proportion of those with classical childhood autism lead independent adult lives. Others, particularly those with 'high-functioning' autism and so-called Asperger syndrome will improve enough to live an independent adult life. The level of mental retardation and other comorbid conditions (such as medical syndromes and other neuropsychiatric disorders, including epilepsy) is important in predicting outcome…There is a continued need for prospective, longitudinal studies of children with autism spectrum disorders, particularly in Asperger syndrome. The role of interventions of various kinds needs to be addressed in such studies.
So over 40 years of “research” on autism, and millions of dollars in NIH money, we have a handful of studies of small numbers of people and a few review articles.
This is pathetic, especially when we think of all the money we’ve wasted on vaccine distractions. In a just world the last five directors of the National Institutes of Mental Health would be grilled by a rabid Congressional subcommittee. What the heck have they been spending their money on?
To underscore just how bad the research record is, the lay literature is competitive. Send in the Idiots traces five people’s story from childhood to adulthood; in this context it qualifies as qualitative research.
So what can we say from Andrew’s story, other than that there’s a hell of a lot of suffering in this world?
Not much. In 2009 we know about as much about developmental brain disorders as 19th century physicians knew about fluid balance. In those days doctors couldn’t meaningfully distinguish right sided heart failure from renal failure from venous insufficiency from lymphedema. We didn’t make much progress until new instruments (the stethoscope for one) and new thinkers (William Osler) tore up the old classifications and started over with careful observation.
Today, 100 years after Osler, we seem to have forgotten how to observe the natural history of disorders we don’t understand.
With autism and other disorders of brain development, we need to start over with new diagnostic definitions, new qualitative research, and new retrospective and prospective studies of the course of the disorder. We’ve screwed around long enough.
Oh, and fire the Director of the NIMH ok?
I have two additional comments on the specific story of Andrew. One is that, if he can be restrained from harming himself or others, the future need not be hopeless. We all know of schizophrenics who, with medication and time, improved considerably.
Secondly, if the description we've been given is reasonably accurate, I believe a thoughtful psychiatrist would delcline to place Andrew in any pre-established diagnostic category -- neither schizophrenia nor autism nor anything else. So there is no ability to predict outcomes, and all treatment will be empirical.
Friday, March 20, 2009
Beyond bowling - Obama's goof is good news for special needs sports
We now know who will be front and center at the next Special Olympics ...
Barack Obama indulges in armchair politics with Leno | World news | guardian.co.uk
... It was all going perfectly, in fact, until Leno eased the conversation away from the economy and onto sports, asking Obama if he enjoyed bowling. The president said he found time to practise, but had only managed a score of 129. "That's very good," Leno interjected mockingly, at which point Obama became sufficiently amused, it seemed, to forget, for one cringe-inducing second, that he was on television.
"It's like the Special Olympics, or something," he replied, in what seemed meant as a self-deprecating joke – and from the expressions that flickered across both men's faces it was clear they both knew Obama had committed arguably the first rhetorical gaffe of his young presidency...
It's hard to be perfect, but we shouldn't let our sympathy for Obama's burdens detract from this golden opportunity. The cruel rules of politics require a make-up, maybe even someone in the cabinet tasked to pay attention to sports for special needs adults, children, and students of all ages.
Special Olympics has, of course, gone far beyond bowling. Outside of Special Olympics some communities feature sports like Special Hockey (incl in Minnesota).
In most schools and communities, however, there's mostly ... bowling.
A lot of people love bowling, but not everyone. Not me, for example -- though smoking bans have made alleys tolerable. It isn't, however, a great contributor to lifelong fitness and skills.
We need to raise the bar on special needs sports. I've been involved with special hockey for four years now, and even though it seems impossible it has been working. (One current challenge is that our early 5 foot non-skaters are now over 6 feet tall and skate about as fast as me, so the skill range is getting a bit wide.)
Special Olympics deserves support, and, thanks to President Obama's gaffe, that's more likely now. We should ask the same of schools.
Saturday, March 14, 2009
Math fact drills for an Asperger's child - two excellent solutions
There are three obvious contributors. The first is that his working memory could be better. Perhaps related to that, he dislikes memorization tasks (two traits I share). Lastly, he has an uneasy relationship with time and especially with timers.
Since computer time is a positive reinforcer for him we tried some computer based math exercises. First I went to the web, where I was again reminded of an old unsolved business problem. We have yet to figure out a way to deliver quality web based software solutions to this kind of niche market. It's not a technology problem, it's a business problem.
The best web solution I could find was Math Playground, and that required digging through heavily ad surrounded sites, sensory overload sites that were annoying even to a non-Asperger's person, dozens of me-too sites, spam sites, suspicious domains, and so on. In other words, lots of junk or marketing efforts.
Once upon a time I might have tried finding educational software for OS X or even (further back) Windows, but that market hasn't just died, it's died a thousand deaths. Another market failure, one perhaps related to the web failure. (Hint, no copy protection, niche market, high cost of entry, high cost of marketing, etc.)
Of course there's also the Wii, but those apps tend to be very expensive (Nintendo's cut), heavy on the entertainment, and rarely focal enough for my needs.
So I skipped from the web to the astoundingly successful Apple (iPhone/iTouch) App Store.
There I downloaded five Math Drill apps. Some cost money, some were free. The ones that cost money were all less than $3 so, as far as I was concerned, they were as good as free. There are lots more Math Drill apps on the site, but these all had some history of use and reasonable ratings. The ones that cost money had very good ratings. (Hint, always read the negative reviews first, and look for the rational critics.)
These included
- Mental Maths: This one's from a German math prof I think. Must be German, since the "level 2" multiplication was somewhat challenging even for me, and there are four levels of difficulty! The key feature is one can adust both time limits and difficutly, and store statistics by name (so different children can be tracked). (The app needs a way to clear the statistics by the way!) During the exercise one gradually uncovers a pleasant animal image, which was just right for B2A.
- Math Cards: Simple, this one shows multiple choice answers and tracks one's score. I prefer having my son enter the numbers, so it's not quite enough.
- Math Drill Lite and Math Drill: The Lite version is free, but you can't track settings per child/student. For that you need Math Drill ($2). So try the Lite version first. In a few minutes testing I was happy enough with the Lite version that I upgraded. You can create many students (I created four - 3 kids and me). The active student name displays prominently on the first screen, a feature Mental Maths could emulate. The UI is attractive, there are lots of student-specific settings, and there's an optional number line.
- Mighty Math Lite: Ad supported, and I find them extremely annoying. It's "free". I really don't like most free software, and this one was no exception. Avoid it.
- Flash Cards: Again, multiple choice, fairly comparable to Math Cards. Free I think.
Apple's on to something here. I think the combination of the App Store distribution channel and the iPhone/iTouch platform are going to take niche software, including special needs software, in a very interesting direction.
Friday, March 13, 2009
Cognitive disability and false confession to crimes
All memories are highly suggestible, but persons with cognitive disorders are particularly prone to memory distortion. They may feel innocent when they are guilty, but, perhaps more significantly, feel guilty when they are innocent ...
When an Innocent Confesses to a Crime: Scientific American PodcastI'm stretching a bit here, the research doesn't say that low IQ and special needs children and adults are particularly vulnerable to false confession. But do you doubt it?Confession of a crime is considered highly persuasive in court. It seems inherently honest. Why would an innocent confess guilt? It appears counterintuitive to basic human self-interest.
And yet, innocents do confess, and studies have shown that they are highly persuasive, even when jurors know they were coerced. According to the Innocence Project, false confessions contributed to 25% of wrongful convictions in the U.S. in 2008.
Hyperbaric oxygen therapy - sounds crazy to me
Can hyperbaric oxygen therapy help autistic kids?: Scientific American BlogThey have no idea why it might work. I'd bet a $50 donation to CARE.ORG that two years from now this goes nowhere. It's just too weird.
... New research in today's BMC Pediatrics may give the therapy more credibility as a treatment for autism. The randomized, double-blind controlled study of 62 children found that those who received 40 hours of treatment over a month were less irritable, more responsive when people spoke to them, made more eye contact and were more sociable than kids who didn’t receive it. They were also less sensitive to noise (some autistic children experience a kind of sensory overload from loud sounds and background noise). The most improvement was observed in kids older than five (the study included children ages two to seven) who had milder autism...
Any takers?
Update 3/14/09: Hoisted from comments:
... look at the some of the authors of the study... Rossignol, who works with Jeff Bradstreet. 'Nuff said. And James Neubrander, the self-proclaimed inventor of MB12 injections to treat autism and who has links to various sites promoting chelation and Valtrex on his web site. Yeah, this one is full of credibility.Now here's the bit that gives me the despairs.
In addition to being expensive to insurers, this treatment will expose children to the risks of hyperbaric oxygen therapy (there's no such thing as a risk-free treatment) and to the trauma of close confinement. It sucks time, money and energy from their families. We'll have to now spend millions continuing investigations, with the most likely outcome being that this is worse than a waste.
If I turn out to be wrong, I'll donate $200 to CARE.ORG.