Autism spectrum disorders as disability vs different ability – a recent debate

Writing in the Britannica blog,  John Pitney replies to a Stanley Fish article …

Stanley Fish and Autism –John Pitney - Britannica Blog

In an entry on his New York Times blog, Stanley Fish wonders whether autism is just another “difference” like race or sexual orientation….

… Fish hints that autism may be a superior form of existence.  “A genetic difference is often adaptive and can be regarded as an advance in the evolutionary process…

… Apparently Fish gets his knowledge of autism from another movie, Rain Man.  (If you haven’t seen the picture, it portrays Dustin Hoffman as an autistic adult who can perform amazing feats of memory.) In real life, few autistic people have savant skills.  Among those who do, a large portion have severe problems with other areas of life such as toilet training.  It’s ridiculous to compare them to the X-Men.

Fish takes his cue from the “neurodiversity” movement, which questions whether we should see autism as a disease or disability.   Like adherents of this movement, he fails to make the crucial distinction between autistic people and the condition itself…

… That is reckless.  Autism is not a personality quirk.  It is a complicated neurological disorder that involves the entire brain.  It affects speech, language, body movement, memory, and emotion.  It comes in many varieties and degrees of severity, but even the “mildest” forms are life-shaping disasters. 

Fish might still object that the “disorder” label stigmatizes something that is merely a “difference.”  To say that autism is just a difference is like saying lung cancer is just a different form of cell growth and that painful wheezing is just a different form of respiration.

In his play Professional Foul, Tom Stoppard writes that “you can persuade a man to believe almost anything, provided he is clever enough.”  Stanley Fish is a very clever man, and other clever people will derive fleeting amusement from his comparison of autism to mutant superpowers.  He will now move on, and apply his drive-by cleverness to other topics. 

Meanwhile, he has done real harm by trivializing the struggles of autistic people, including my little boy.

During the 1970s there was a populist “revolt” against psychiatry. Schizophrenics weren’t mentally ill, the rebels claimed, they simply “thought differently”. They should not be strongly encouraged, much less forced, to seek treatment.

To put it mildly, this did great harm. The dark side of this meme persists in Scientology today.

Fish is so wrong on so many levels, not the least of which is a profound ignorance of how natural selection works. I think, though, as with the “don’t treat schizophrenia” movement, there’s an element of truth among the mire.

I’ve written previously about the legitimate scientific foundations for thinking about diverse minds, the fuzziness of our diagnostic categories, the astonishing prevalence of major genetic defects in seemingly neurotypical brains, and (elsewhere) about visualizing neurodiversity.

So for me Fish is mostly wrong, and Pitney is mostly right. In our world and in most conceivable worlds, the diverse disorders we crudely categorize as “autism” are severely disabling a source of sorrow and suffering for autistic person and their families. And yet, even so, there are people (electrical engineers, software engineers, etc) with traits that are highly adaptive in the modern world, even when these traits overlap to a certain extent with high IQ Asperger’s, which in turn overlaps with the most functional end of the so-called-autism spectrum disorder.

If we could “remove the autism” entirely from our children, they would be different people. Lung cancer, to use Pitney’s example, is not a part of a person. Heck, lungs aren’t a part of a person – not really. Aspects of a mind are the person, including disabling aspects. It’s not so easy to separate autistic persons from their disorder.

So if I had magical powers I’d “fix” some of the afflictions my children have – no doubt – but I would not want them to be different people. Some of the traits would have to remain – parts of the people I love – things they would not abandon lest they lose themselves.

Behavioral programs: the latest iteration of our sticker chart reward system

We've evolved our reward system over about 6 years and much trial and error, so I figure it's worth passing on.

I've mentioned it briefly in the context of the behavior mod philosophy we follow:

Be the Best You can Be: Changing behavior in children: Kazdin for most and what we do now

...We've returned to using a sticker chart of about 7 columns by seven rows. Each act is rewarded with praise and a sticker, a column gets a bigger-than-average privilege (ex: 20 minutes on the Wii) or a quarter (the sibs prefer the money, of course the same system must apply to all), a full chart gets a treat or $2.00...

One particular constraint is that we have 3 children who spam the working labels from neurotypical to (for the moment) Asperger's to a a combination of autism, cognitive disability, anxiety disorder, hyperactivity, etc.

So we needed one solution that would work for all of them, and that would be balanced. Every child needs to earn rewards at about the same rate, regardless of absolute accomplishments. (We have a family, not a corporation.)

Given that constraint, and a lot of experimenting, here's the current configuration. It's worked for over a month, which is fairly long by our standards.

• Children earn stickers based on individual goals. Awakening, getting dressed, and going downstairs without rousing siblings earns 3 stickers for one of the children. All kinds of acts get 1-2 stickers. We constantly look for opportunities to give positive reinforcement.
• Doing 1-2 pages in supplementary home study curriculum books we use earns a sticker.
• One column of stickers is good for either 25 cents or 10 minutes on the computer.
• An entire chart of stickers is good for either $2.00 or a family outing to the child's favored destination (often this is lunch out -- the $2.00 is way cheaper).

It takes 5-6 days to fill out a chart. We used to give money directly as a reward, but that flopped. The stickers can be exchanged for money, that works better for us.

OS X 10.5: time limited computer access

Update 5/30/08

Since my original post I installed 10.5.1 and upgraded to 10.5.3. I discovered the shortest possible setting for time limited computer access is 30 minutes (per day).

I need a range where the low end is 10 minutes.

Sigh. Apple engineers need more children.

I also don't recommend regular people install an OS X update to an existing system until the DVDs actually ship with 10.5.3 or later. My install experience was unsettling.

--
Both the Nintendo Wii and computer access (Flash based games) have been big behavior modifiers for the #1 son.

In particular, we used Wii/computer time rewards to get him dressed and downstairs in the morning. His normal tendency was to wake up his sibs, which they did not appreciate.

Combat on first awakening is a bit draining.

Problem is, he's having increasingly severe problems stopping at his allotted time. We had some success with various incentives and disincentives, but he's broken through them.

So he's off computer and Wii altogether while we reevaluate.

Which is why, despite knowing that it's still pretty buggy, I placed an order for Mac OS X Version 10.5.1 Leopard. The killer feature is that 10.5 allows parents (administrators) to set time quotas on user accounts. When the quota is exhausted, the account logs out.

I'm going to give it a try, in the context of limiting access to less enchanting web sites. If he can manage that we'll walk up the enchantment scale. Stopping is a key self-regulatory behavior, so we'd like to use this to teach him some self-monitoring skills.

It won't be easy. It's never been easy. (Ok, so baseball is surprisingly easy ...)

PS. The current version of OS X is 10.5.2, the update from the DVD version is free. We expect 10.5.3 to be released in the next week. My guess is that 10.5.4 will be quite high quality and 10.5.3 will be respectable.

Microsoft's Guardian Angel patent - a sign of next generation support

The bad news is that Microsoft's lawyers consider something as obvious and inevitable as "Guardian Angel" to be patentable. America's current software and process patent laws are insane. At a minimum persons evaluating patents need to be well grounded in science fiction.

The good news is that this is something I have been hoping would emerge sooner rather than later. The value for special needs persons, including the majority of us who develop special needs in our 70s and 80s, could be enormous -- especially when combined with ubiquitous robotics.

United States Patent Application: 0080082465 (Microsoft Guardian Angel)

An intelligent personalized agent monitors, regulates, and advises a user in decision-making processes for efficiency or safety concerns. The agent monitors an environment and present characteristics of a user and analyzes such information in view of stored preferences specific to one of multiple profiles of the user. Based on the analysis, the agent can suggest or automatically implement a solution to a given issue or problem. In addition, the agent can identify another potential issue that requires attention and suggests or implements action accordingly. Furthermore, the agent can communicate with other users or devices by providing and acquiring information to assist in future decisions. All aspects of environment observation, decision assistance, and external communication can be flexibly limited or allowed as desired by the user.

Many persons with cognitive limitations can operate well under ordinary and predictable circumstances. Any disruption to routines, however, can be overwhelming and dangerous. Technology of this nature can make a broader educational, work, and personal life possible.

Thinking differently about different minds

Friends and families of special needs children and adults know that (soon to be obsolete) terms like "autism", Asperger's, and "mental retardation" cover an enormous spectrum of variation.

That variation requires a customized management program to make each person "the best they can be", but we don't have the science or the people to begin designing and implementing new approaches.

Maybe we can start by realizing that all minds are different ...

What if we could see the diversity of minds?

... human brains are actively evolving now. To quote Hawks (via Marginal Revolution):

We are more different genetically from people living 5,000 years ago than they were different from Neanderthals...

Active brain evolution means lots of variation. Most of the variations are mostly marginally harmful, some quite disabling, some both advantageous and problematic. They all mean that brains are less alike than the bodies we see.

The variation doesn't end there. Brains, among other things, run minds. Minds, among other things, run memes.

Brain, mind and meme give three platforms for variation and selection to play on. It's a recipe for combinatorial variation.

So it's plausible, that if we were able to see minds the way we see bodies, we'd find a very entertaining sidewalk. Some pedestrians would be twenty feet all and thin as posts, others ten feet wide with an extra limb and a tail. Some covered in fur, others green and yellow with antennae...

When we absorb the reality that the cosmetic diversity we dislike, celebrate or ignore is only a pale shadow of the diversity of minds, we'll start "thinking differently" about how to approach the development of all minds.

From that may come smarter, better, and, yes, cheaper, approaches to making special needs minds the best they can be.

Autism turns into Asperger's - how did that happen?

"Sam" (pseudonym) isn't "autistic" any more. Now he has "Asperger's".

He used to have "autism", so what happened? What was the key intervention?

Was it abstention from immunization? No, he gets poked regularly.

An alternative or experimental medication? No, he's never taken any medications (unlike his sib - we treasure medications when they're valuable).

An intense program of behavioral therapy? No, he's mostly inherited the fringes of the home built behavioral program his older brother needs.

Dietary changes then? Vitamins, supplements, abstention from gluten? Well, he only accepts a very limited diet, but it contains a reasonable amount of gluten, wheat, etc. He's finally accepted his sister's daily multivitamin, which might help avert scurvy.

A quiet, calming, nurturing home environment? *Cough*. No.

A brilliant set of therapists and teachers? Actually, we've been pretty lucky with his school teachers and he's had some very good therapists. So points there maybe.

Really, though, as you've probably guessed by now, the "transition" is due to two things:

1. The slow change in the definition of "autism".
2. The unstudied and mysterious natural history of disorders of the developing brain.

First, the change in definition.

"Sam" had significantly delayed and disordered language development, that, in combination wiht other findings that gave him a "slam dunk" diagnosis of "high functioning" autism. It used to be, "once autism, always autism", even if the subsequent course looked more like Asperger's.

Well, definitions, like species, evolve. The new fashion is to make the labels "descriptive" of the current state, perhaps as part of a recognition that we really don't know what the heck these things are beyond "developmental brain disorder".

It's this kind of change in definition that confounds naive research. It's the first part of "Sam's" reclassification.

The second part of the reclassification is "Sam's" course. In many ways he's done very well. We're happy, but how unusual is that?

We don't know.

We really don't know the "natural history", that is, the expected course, of these disorders. I've been tracking the medical literature on this topic, and there have only been a handful of studies tracking the course of children labeled as "autistic". As in maybe 1-2 half-decent studies.

We don't know if it's common to improve, we don't know if one can see pre-adolescent improvement and then adolescent regression, we don't know much at all.

It's pretty hard to study treatments of a disorder when you don't know how it usually goes!

Working memory can be improved by training

In experimental subjects, which are usually undergraduates majoring in psychology, working memory can be improved (emphases mine) ...

Memory Training Shown to Turn Up Brainpower - New York Times

... The key, researchers found, was carefully structured training in working memory — the kind that allows memorization of a telephone number just long enough to dial it. This type of memory is closely related to fluid intelligence, according to background information in the article, and appears to rely on the same brain circuitry. So the researchers reasoned that improving it might lead to improvements in fluid intelligence.

First they measured the fluid intelligence of four groups of volunteers using standard tests. Then they trained each in a complicated memory task, an elaborate variation on Concentration, the child’s card game, in which they memorized simultaneously presented auditory and visual stimuli that they had to recall later.

The game was set up so that as the participants succeeded, the tasks became harder, and as they failed, the tasks became easier. This assured a high level of difficulty, adjusted individually for each participant, but not so high as to destroy motivation to keep working. The four groups underwent a half-hour of training daily for 8, 12, 17 and 19 days, respectively. At the end of each training, researchers tested the participants’ fluid intelligence again. To make sure they were not just improving their test-taking skills, the researchers compared them with control groups that took the tests without the training.

The results, published Monday in The Proceedings of the National Academy of Sciences, were striking. Although the control groups also made gains, presumably because they had practice with the fluid intelligence tests, improvement in the trained groups was substantially greater. Moreover, the longer they trained, the higher their scores were. All performers, from the weakest to the strongest, showed significant improvement...

... No one knows how long the gains will last after training stops, Dr. Jaeggi said, and the experiment’s design did not allow the researchers to determine whether more training would continue to produce further gains.

Fluid intelligence is a part of what determines IQ scores on tests.

I reviewed the PNAS abstract, but there wasn't much there (psychologists don't do structured abstracts, alas). The PDF costs money -- PNAS isn't part of the "open access momvement". I'd like to know how big the improvements really were.

One of my children's working memory is very limited. A 10 to 15% improvement might make a big difference in what he's able to do. If other studies replicate these results we might hope to see a training program developed.

Update 7/5/08: Hoisted from comments, by Martin of MindEvolve:

I was so impressed that I splurged for the full study. The improvements weren't subtle. Over the course of 19 days, the number of objects held in working memory just about doubled, and scores of raw intelligence increased by as much as fifty percent.

I was so impressed that I contacted Jaeggi and her team and developed a software program using the same method so that anyone can achieve these improvements at home. (For just $9 more than purchasing the study!) ...

Martin is marketing a product he's developed here, but he's been at this for a while. So it's intriguing ...

Update 12/14/2008: The full text of the article is now available for free online. See my Dec 2008 f/u essay.

Special needs children and family income

The only surprise here is that that family income decrease is only about a 14%, though the total cost was estimated at closer to 25% of income. (via FuturePundit: Autistic Kids Lower Parental Income, emphases mine):

The costs of raising kids with developmental defects is very high

New research suggests that the average household with children with autism not only spends thousands of dollars toward educational, behavioral and health care expenses each year, but also suffers from a lesser-known cost that hits them up front – a sizeable chunk of missed household income, perhaps as much as $6,200 annually....

...“That’s a staggering 14 percent loss,” Montes said. “We presume this may be strongly related to a lack of appropriate community-based support resources and services...

The study, published in April’s edition of Pediatrics... is based on data from the National Household Education Survey on After School Programs and Activities in 2005, a telephone questionnaire that drew on parents of more than 11,000 children, kindergarten-age through eighth grade. Parents reported if their child had an autism spectrum disorder, or ASD (that is, if he or she had ever been diagnosed with autism or a pervasive developmental disorder), their total household income and their highest level of education. Several other demographic details were collected, including the parent’s age, type of family (two parent or otherwise) and whether they lived in an urban or rural locale...

...Data collected from 1999 to 2000 showed that each year U.S. taxpayer dollars collectively pay $12,773 of the annual education expenses associated with each child with autism. In spite of this assistance, ASD-affected families still bore the brunt of the financial burden. Between un-actualized income (again, estimated near $6,200) and extensive out-of-pocket ASD-related expenditures – one 2006 national study from the University of Rochester estimated that these families paid nearly $5,300 more than other families – this direct-to-family cost may exceed $11,000 each year...

The authors speculate that the income shortfall may be affected by milder developmental disorders in the parents, however the interaction is complex.  Because the projections adjust for parental education, which would be affected by relatively subtle parental disability, a parental disability effect may be already accounted for in the model.

In our situation (adopted children) the income decrease is probably closer to 50%. We still do very well, so no complaints there! The key point is that the burden of cognitive disabilities is very high and lifelong.

This study provides an economic motivation, if we need any, to justify research in identifying the causes of cognitive and behavioral disabilities and creating prevention and mitigation strategies. Prevention, of course, won't help our family very much, but I think there's a lot (lot, lot) more we could do on the mitigation side.

The candidates and disability policy

Crooked Timber's Michael Berube has summarized the disability policies of the three contending candidates:

Crooked Timber -- Disability and Democracy.

McCain's policy is fairly simple ...

... Yes, well, McCain’s disability policy is much easier to summarize: (a): we need to cut costs; and, following from (a), (b): don’t become disabled...

Clinton does a very good job ...

... A Hillary Clinton Administration would be quite good on disability/ health and disability/ employment, and generally good for my kid – this one, not the college senior who turns 22 today...

but her web site does a poor job of displaying her disability policies.

Obama's plan is "... remarkably enough, at once broader and more specific than Clinton’s". For example:

... proposes “a comprehensive study of students with disabilities and transition to work and higher education” – something that (a) has never been done and (b) is of great interest to teenagers with disabilities and their loved ones. “As president,” we’re told, “Barack Obama will initiate such a study and task his Secretary of Education with researching: the barriers that keep students with disabilities from seeking and completing higher education; the barriers that prevent students from making a direct transition to work; the extent to which students with disabilities are able to access loans and grants; reasons college students with disabilities drop out at a higher rate; and best practices from schools that have effectively recruited and graduated students with disabilities that can be implemented more widely.” This is, as you might imagine, a (cough) special interest of mine. But that’s not just because I have a 16-year-old with Down syndrome. In recent years I’ve had many fine students at Penn State – twenty-year-olds with dyslexia, or Asperger’s Syndrome, or arthritis, or mild cerebral palsy – request “reasonable accommodation” from me on final exams. And I’ve been amazed and appalled at how few many of my colleagues (here or elsewhere) seem to believe that they’re under no obligation to provide reasonable accommodation for everyone. (Guess what? If you teach in the United States, you have that obligation! It’s a real federal law!) So I’m thinking that “a comprehensive study of students with disabilities and transition to work and higher education” might not be a time-wasting exercise for disabliity-policy wonks. I’m thinking that it might actually make a world of difference for students with disabilities – in high school, in transition, and in college...

Among the topics Berube reviews are:

• limitations on the ability of insurers to discriminate on the basis of preexisting conditions
• fudning of IDEA (the grossly under-funded Individuals with Disabilities Education Act).
• federal employment support for persons with disabilities
• Tom Harkin's ADA Restoration Act (overturn Supreme Court decisions that have limited the ADA's scope).
• Genetic Information Nondiscrimination Act (GINA), which prohibits discrimination on the basis of genetic information by employers and health insurers. (Tom Coburn has blocked passage of this in the Senate).

The bottom line of course is that either Hilary or Obama are light years better than McCain for persons with disabilities and their supporters.

Wanted: a class action lawsuit on academic skills testing for special needs children

I don't have time to sue the State of Minnesota, but I'd be glad to sign on to a class action suit. I don't want any money -- in fact I'll donate towards a lawsuit.

I wouldn't mind the state's standardized testing program if my son was being tested on something he's studied. If he were being tested on third grade rather than fifth grade material I'd be pleased to participate. That's not how the unthinking robots who wrote the No Child Left Behind law chose to proceed however:

"The Minnesota Test of Academic Skills (MTAS) is Minnesota’s alternate assessment based on alternate achievement standards. The MTAS is part of the statewide assessment program and measures the extent to which students with significant cognitive disabilities are making progress in the general curriculum. The MTAS in reading and mathematics was administered for the first time in spring 2007. Beginning in 2007-2008, the MTAS is administered in reading, mathematics and science.

In order to meet federal NCLB requirements, the MTAS has been aligned with the academic content standards established for all students (i.e., Minnesota Academic Standards). Alternate assessments based on functional skills or skills that are taught at an earlier grade level may not be used for AYP calculations..

So my child loses about two weeks of education (which he greatly needs) and spends most of the day eating candy and playing word games after spending a few minutes pointlessly scribbling on material he can't possibly follow. He's stressed and depressed, and the ordeal has barely begun.

His score will then become a problem for his school, which will be motivated to get him to move on and out, thereby showing nice year-on-year improvement.

This is child abuse. Heck, I feel guilty of child abuse for not keeping him home -- no matter what the law says.

Come on you hungry lawyers! Go for it. Rip their throats out. Get rich and make us happy.

Please.