Thursday, August 30, 2007

An astronaut with Asperger's

When I first read of Lisa Nowak's infamous cross-country drive, I was fairly confident that she was having a psychotic episode. I did not suspect she also had Asperger's syndrome:
Former astronaut Lisa Nowak will claim temporary insanity - Los Angeles Times

Former astronaut Lisa Nowak plans to claim she was temporarily insane when she attacked Colleen Shipman on Feb. 5 at the Orlando International Airport.

Her attorney, Donald Lykkebak, filed a notice of this type of defense late Monday with the Orange County Clerk of Courts.

Some of the reasons listed in the notice include "a single episode" of major depressive disorder, severe insomnia and obsessive-compulsive disorder. The plea also notes Nowak's marriage problems and inability to confide in family members or others, as well as her large weigh loss.

It also diagnoses Nowak with Asperger's Disorder, a condition with autistic-like symptoms that causes problems with social skills and can lead to eccentric behavior...
There are two aspects of this story if interest to our community. One is how the law should handle diminished capacity. I personally favor a tailored approach based on the future likelihood of harm to self and others, but that's not what I'll discuss here. The other aspect of interest is her history, and I believe the diagnosis is likely correct, of Asperger's syndrome.

It's a cliche that a large portion of electrical engineers could have met the diagnostic criteria for Asperger's as children, and could probably meet it today. Lisa is an aerospace/astronautical engineer. It's not electrical engineering, but it's close enough. I would love to see a real study that tested how true the cliche is. The first man on the moon, Neil Armstrong, was also an aeronautical engineer and famously shy and publicity adverse. I wonder how he'd test out.

My personal sense is that individuals with Aperger's, and with high-IQ autism (the definition of both is famously inexact, they likely overlap) can do extremely well in some settings. They do, like all of us*, retain weaknesses they must continue to compensate for. I don't know how much of a role Lisa's Aperger's played in her tragedy, but I suspect the combination of obsessive-compulsive disorder, Asperger's and depression was just the "right" wrong mix. As psychiatry continues its sluggish and difficult transformation into a scientific trade, there will be more of an emphasis on how persons with austism, Asperger's, attention-deficit disorder and obsessive-compulsive disorder can leverage their strengths and offset their disabilities, and how decompensation can be recognized and individually managed.

Good luck Lisa. Oh, and astronauts -- if someone tries to make Asperger's a disqualifying diagnosis, insist they test Neil first.

* When the gene testing does emerge, it will be interesting to learn how many of us have the predilections.

Sunday, August 19, 2007

Salon's obscure forum for special needs parents

My wife found this by chance and I had a hard time rediscovering it. Buried in the creaky* Table Talk discussion forums of Salon (not on the WELL, which Salon also hosts), in the Family Life discussion area, is the "x-treme parenting discussion":
The joys and challenges of parenting a child "on the far end of normal." Physical and developmental delays and disabilities, learning and attention problems, emotional, behavioral, and chronic health issues. Diagnosis, treatment, and daily life. No topic is too large or too small, and all are welcome.
It started with a single post in 2005 and the discussion's been running for about 20 years a few thousand posts. It's a bit of a mystery that this thread has lasted so long...

* How creaky? The URLs embed the user login identifier - so creating this post took some careful editing! In one case I had to retain the identifier to allow the link to work. Medieval, really.

Saturday, August 18, 2007

My comment on a Slashdot thread: Failing Our Geniuses

I suspect we don't have real data on the outcome for "geniuses", much less for high IQ children. In any case, this was my comment on a typically erratic Slashdot thread discussing a Time magazine article on "gifted" children:
Slashdot | Failing Our Geniuses

We fund special education for several reasons, one of which is to minimize adult economic dependency and disability. That is a clear social good. A secondary motivation is compassion for people who've been very significantly disadvantaged. This funding includes high IQ persons with disabilities such as Asperger's, autism, etc.

I'm not aware of any data showing that a significant number of "geniuses" (a fuzzy concept, I've met only a few true geniuses, and that group included Richard Feynman) are economically dependent. I'm even more skeptical that a significant number of people with IQs over 140, in the absence of qualifying conditions (ADD, autism, etc) are disadvantaged. Let's not use MENSA as a guide, I don't think that's a representative body.

I would even wager that we could eliminate 25% of the school day for high IQ students and have minimal impact on any kind of outcomes. I happen to know a fair number of high IQ adults, and I have not seen any correlation between the "quality" of their early education and their outcomes. The greater impact, by far, is the wealth of their parents ts -- and that primarily manifests not as economic rather than absolute relative outcomes. For example: family physician vs. partner in prestigious law firm.
By way of context, of two special needs children I know well, one is also "gifted". For that matter my wife and I were "gifted" too, and we were satisfied with our rather plain Canadian educational experience.

Saturday, August 04, 2007

The Personal Care Attendant: things I wish I'd known

The state of Minnesota has paid for a personal care attendant for our son for the past 2-3 years. In our case the service has been managed by an agency I'll call "The Agency". We've had a couple of young men, one of whom lasted a few months. We've gone through 3-4 young women, all students, with a bit more success. Along the way we've learned a few lessons worth passing. I'll try to summarize them here:
  1. There are books written about how to acquire and maintain a PCA, such as The Personal Care Attendant Guide: The Art of Finding, Keeping, or Being One. Katie Rodriguez Banister. Who knew? The Amazon page for this book links to others. We're going to order a couple.
  2. The PCA system was designed for the care of persons with severe cognitive and/or physical disabilities. The system is a poor match for our needs -- a physical very active child with complex behavioral and cognitive disabilities.
  3. A PCA has to work with the funded child. This is a poor fit for our needs. Often we are the only people who can handle our funded child, we'd like the aide to switch tasks and cover the other children. In practice they often fudge things and do this, but they're not supposed to.
  4. Any PCA who has the skills and physical abilities to work with our child isn't doing the work for the money. The stipend they receive is very marginal, especially after The Agency takes their cut. Our PCAs are mostly working for experience consistent with their studies and career track. This means any aide will last at most 1-2 years before their career takes them in other directions.
  5. The PCAs we've worked with have received little or no relevant training from The Agency. I think, in retrospect, that we should have more directive about what training our PCAs needed prior to starting -- or set up our own training program.
  6. Reliability: Our PCAs are young, between the ages of 19 and 23 typically. Sometimes their parents don't seem to remember that their daughters are doing real work. Reliability and schedules can be challenging.
  7. We have had chronic problems with finding aides to fill our allotted hours. Our Agency is supposed to "bank" unused hours, since it seems they're paid for them. We're not confident that the hours have been truly "banked" or if we'll ever get credit for them. Certainly if we leave the agency I suspect we'll lose the ours.
  8. The PCA program has to be renewed annually. We weren't aware of that and it appears The Agency forgot some of their required tasks. We need to take on more of the tracking of those tasks ourselves.
  9. Nanny/funding: I think we'd be better off if we could get the state to simply send us cash for the hours we have PCAs assigned. We could then put the state money and our own money towards a high end Nanny who could work as much with our other children as with our funded child. Alas, I don't think the system works this way.
What we hope to do going forward:
  1. Prepare any aide for aggressive behavior. Have they ever been hit? Do they know how to respond?
  2. Require The Agency to provide training in self-defense and managing aggression issues.
  3. Develop a curriculum and reading program for the PCA. For their initial hours assign them readings and study materials before they start work.
  4. Expect aides to last 6-12 months and encourage them to keep an eye open for their replacements.
  5. Look at alternatives to using The Agency.
Update 10/16/07: The Agency's standing dropped into the sub-basement when we discovered they'd never initiated the required yearly reauthorization procedure - but they continued to provide services and hours while billing the state.