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 Huge and hairy -- a young man who grows a beard by twilight -- he suddenly became as withdrawn as he'd been at 4.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?

Update 3/27/09: After sleeping on this, and thinking how incredibly hard it is to do natural history studies on this particular topic, I decided to give the current and former NIMH directors a break. So maybe time outs rather than termination. Our knowledge is so incredibly limited, however, that it would be well worthwhile to qualitatively profile four or five hundred adults with a history of childhood autism or Asperger's. Forget representative selection, just find whoever we can get and do the interviews. That's a study we could do and fund this year, and I'm confident it would tell us a lot. It would also make it impossible to ingore the depth of our ignorance.

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.

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.

Math fact drills for an Asperger's child - two excellent solutions

B2A (boy #2 with many great features and also Aperger's) does well enough at school, but very poorly on timed math tests. He basically seizes up.

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.
  

Of the five apps I tried only one was a real dud (stupid advertisers), two are excellent, and two are quite useable (free I think, but at these prices I don't pay too much attention).

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.

Cognitive disability and false confession to crimes

Adults and children with cognitive disorders are vulnerable in many obvious ways, but also in some less obvious ways.

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 Podcast

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.

I'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?

Hyperbaric oxygen therapy - sounds crazy to me

I really don't believe these results ...

Can hyperbaric oxygen therapy help autistic kids?: Scientific American Blog

... 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...

They 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.

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.

Increasing working memory - should we use this with special needs children?

I've written previously about research that suggests working memory can be improved ...

• Improving working memory in low IQ children
• Working memory can be improved by training
  

The speculation is that this might bump IQ a bit, maybe enough to make an employability difference for some children. Recently the NYT returned to the topic. They're mostly reviewing the material covered in the above links, but it's a useful summary.

Guest Column: Can We Increase Our Intelligence? NYTimes.com

... This week we discuss intelligence and the “Flynn effect,” a phenomenon that is too rapid to be explained by natural selection.

It used to be believed that people had a level of general intelligence with which they were born that was unaffected by environment and stayed the same, more or less, throughout life. But now it’s known that environmental influences are large enough to have considerable effects on intelligence, perhaps even during your own lifetime.

A key contribution to this subject comes from James Flynn, a moral philosopher who has turned to social science and statistical analysis to explore his ideas about humane ideals. Flynn’s work usually pops up in the news in the context of race issues, especially public debates about the causes of racial differences in performance on intelligence tests. We won’t spend time on the topic of race, but the psychologist Dick Nisbett has written an excellent article on the subject.

Flynn first noted that standardized intelligence quotient (I.Q.) scores were rising by three points per decade in many countries, and even faster in some countries like the Netherlands and Israel. For instance, in verbal and performance I.Q., an average Dutch 14-year-old in 1982 scored 20 points higher than the average person of the same age in his parents’ generation in 1952. These I.Q. increases over a single generation suggest that the environmental conditions for developing brains have become more favorable in some way.

What might be changing? One strong candidate is working memory, defined as the ability to hold information in mind while manipulating it to achieve a cognitive goal. Examples include remembering a clause while figuring out how it relates the rest of a sentence, or keeping track of the solutions you’ve already tried while solving a puzzle... Differences in working memory capacity account for 50 to 70 percent of individual differences in fluid intelligence (abstract reasoning ability) in various meta-analyses, suggesting that it is one of the major building blocks of I.Q. (Ackerman et al; Kane et al; Süss et al.) This idea is intriguing because working memory can be improved by training.

A common way to measure working memory is called the “n-back” task. Presented with a sequential series of items, the person taking the test has to report when the current item is identical to the item that was presented a certain number (n) of items ago in the series. For example, the test taker might see a sequence of letters like

L K L R K H H N T T N X

presented one at a time. If the test is an easy 1-back task, she should press a button when she sees the second H and the second T. For a 3-back task, the right answers are K and N, since they are identical to items three places before them in the list. Most people find the 3-back condition to be challenging.

A recent paper reported that training on a particularly fiendish version of the n-back task improves I.Q. scores.... [jf see my links, above]

...People benefited across the board, regardless of their starting levels of working memory or I.Q. scores (though the results hint that those with lower I.Q.s may have shown larger gains). Simply practicing an I.Q. test can lead to some improvement on the test, but control subjects who took the same two I.Q. tests without training improved only slightly. Also, increasing I.Q. scores by practice doesn’t necessarily increase other measures of reasoning ability (Ackerman, 1987).

... Now, some caveats. The results, though tantalizing, are not perfect. It would have been better to give the control group some other training not related to working memory, to show that the hard work of training did not simply motivate the experimental group to try harder on the second I.Q. test. The researchers did not test whether working memory training improved problem-solving tasks of the type that might occur in real life. Finally, they did not explore how much improvement would be seen with further training....

NOTES:

C. Jarrold and J.N. Towse (2006) Individual differences in working memory. Neuroscience 139 (2006) 39–50.

P.L. Ackerman, M.E. Beier, and M.O. Boyle (2005) Working memory and intelligence: the same or different constructs? Psychological Bulletin 131:30–60.

M.J. Kane, D.Z. Hambrick, and A.R.A. Conway (2005) Working memory capacity and fluid intelligence are strongly related constructs: comment on Ackerman, Beier, and Boyle (2005). Psychological Bulletin 131:66–71.

H.-M. Süss, K. Oberauer, W.W. Wittmann, O. Wilhelm, and R. Schulze (2002) Working-memory capacity explains reasoning ability—and a little bit more. Intelligence 30:261–288.

S.M. Jaeggi, M. Buschkuehl, J. Jonides, and W.J. Perrig (2008) Improving fluid intelligence with training on working memory. Proceedings of the National Academy of Sciences USA 105:6829-6833.

D.A. Bors, F. Vigneau (2003) The effect of practice on Raven’s Advanced Progressive Matrices. Learning and Individual Differences 13:291–312.

P.L. Ackerman (1987) Individual differences in skill learning: An integration of psychometric and information processing perspectives. Psychological Bulletin 102:3–27.

Footnotes! Wow. BTW, The removal of lead from our environment accounts for some of the Flynn effect, and so might the starvation diets of many pre-1950 europeans ...

On a personal note although people sometimes tell me they think I'm clever, I'm terrible at memory exercises. So if I could get my son to do these exercises, I'd give it a try myself.

At the moment Lumosity is the only working memory "game" for the iPhone.

Teaching perseverance

We haven't figured out even half the answers for #1, but we're in a bit of a pause. Familiar patterns, familiar problems, familiar management.

On the other hand, #2 is raising new questions. He's fairly "classic" Asperger's (which is a bit like saying someone is a "jock", meaning there's a lot of latitude in there), and has a typically low tolerance for challenges.

Some people seek out the hard stuff, because they enjoy the struggle for mastery. The easy stuff isn't interesting.

He's not like that.

If something's not fairly easy, he doesn't like it. Struggle is not his thing. Perseverance is illogical.

That's not a recipe for living well in a world that's usually outside his comfort zone.

So how do we teach "frustration management" and strengthen his limited ability to persevere?

Some quick web searches turn up "kid stuff" -- techniques that work for neurotypicals but that we've long ago exhausted. We've got the techniques, what we need is a multi-step program. We need to figure our a staged sequence of progressively more challenging tasks, balancing those with things he likes, while training on techniques to manage the emotional content of frustration -- understanding how to work through his initial responses ...

A Road Less Traveled

Most parents don’t choose a disabled child. Mostly, it happens.

You think you’re going to Italy, but the plane lands in Alaska.

If you’re able, you learn to like Alaska.

This NYT story isn’t about special needs or disabled children, but it is about living well with the life you’ve got …Modern Love - In a Charmed Life, a Road Less Traveled - LAYNG MARTINE Jr - NYTimes.com.

… We know that most people — strangers, anywhere — will knock themselves out to help us if we explain what we need. We know to say “Yes” to nearly everything because there is probably a way to do it. We know there is happiness available every day, most of it requiring more effort than money…