Be the Best You can Be

Ritalin and Adderall shortages -- the DEA and the other side of outrage

2011-12-31T17:55:00.001-06:00

Beyond outrage, there is a point where we can only laugh and cry...

F.D.A. Is Finding Attention Drugs in Short Supply - NYTimes.com
... While the Food and Drug Administration monitors the safety and supply of the drugs, which are sold both as generics and under brand names like Ritalin and Adderall, the Drug Enforcement Administration sets manufacturing quotas that are designed to control supplies and thwart abuse. Every year, the D.E.A. accepts applications from manufacturers to make the drugs, analyzes how much was sold the previous year and then allots portions of the expected demand to various companies.
How each manufacturer divides its quota among its own A.D.H.D. medicines — preparing some as high-priced brands and others as cheaper generics — is left up to the company.
Now, multiple manufacturers have announced that their medicines are in short supply. The F.D.A. has included these pills on its official shortages list, as has the American Society of Health-System Pharmacists, which tracks the problem for hospitals. And the American Academy of Child and Adolescent Psychiatry has told the more than 8,000 doctors in its membership that shortages seem to be “widespread across a number of states” and are “devastating” for children.
Officials at the Food and Drug Administration say the shortages are a result of overly strict quotas set by the Drug Enforcement Administration, which, for its part, questions whether there really are shortages or whether manufacturers are simply choosing to make more of the expensive pills than the generics, creating supply and demand imbalances...

Let us set aside the trivial matter. Drug company CEOs would sell their mother's liver to "meet expectations". I'm sure they're exploiting every legal and even semi-legal angle they can find in an age where patents are expiring and the drug pipeline is dry.

That's not the problem though. Just think for a minute about how this is supposed to work. The DEA wants to stop the recreational use of stimulant drugs. They do this by restricting the supply. So recreational use will stop because one of two things happen. Maybe the drug companies, who get paid either way, will start assassinating stimulant dealers. Alternatively, parents of kids with ADHD will put on capes and masks and start beating up college kids prepping for exams.

Yeah, think about that. How else are these DEA restrictions supposed to work?

Now if you're a relatively young person you may be thinking senior leadership at the DEA couldn't really be this stupid. Trust me, powerful people are often stupid. It's almost a prerequisite.

It's time to contact Senators and Representatives. Again. Here's what I'm sending Al Franken and Amy Klobuchar..

Dear Senator
I read in the New York Times that DEA quotas on stimulant drug production are leading to shortages of critically important medications for the treatment of ADD and related disorders.
I understand that the DEA has set these quotes to motivate parents of children with ADHD to prevent the recreational use of stimulant medications. I assume we're supposed to don costumes and start pummeling stimulant dealers to reduce diversion.
Please ask the head of the DEA to explain to you and all of us how their production quotes are supposed to work. In detail. Repeatedly. Until they get a clue.
Thanks very much...

Special Hockey

2011-11-27T21:35:00.001-06:00

It's the start of another special hockey season in Minnesota. I've just reviewed the slideshow from tonight's game, and the teams look great.

Even after 6-7 years of it, I'm always a bit amazed that it works. The range of players is mind-boggling. One team has a (mercifully) gentle forward who's 6'8" - and all muscle. We have six year olds. Girls, boys, women, and men. We have players who are minimally verbal and players with Aperger's who take advanced study classes. We have chair bound players pushed by aides, and players who've played mainstream hockey.

We have gentlemen players and we have ... well, actually, the range there is pretty limited. This is a good group of people; even my excitable #1 son is learning some manners.

There's been a lot of progress. Even players with significant motor disabilities often learn to skate. For my #1 it's a chance to have fun in a setting where he doesn't feel embarrassed or anxious or "other". He can play with neurotypical teams at school and community, but he can never truly be a part of the team. For #2 it's been an unequalled opportunity to learn flexibility, to live with mistakes, and to work as part of a team. Even, this year I think, to learn to lose gracefully.

There are many similar opportunities in Special Olympics, but for us this activity has worked extremely well. While #1 could quality for Special Olympics, he performs at a relatively high athletic level for the sports he likes (he may play SO Golf next year). I don't believe #2 would meet Special Olympics guidelines, yet Special Hockey has been enormously valuable for him.

It's a movement worth supporting.

High school tips (grade 9)

2011-11-27T19:09:00.001-06:00

We're about half-way through grade 9 for #1 son at a Twin Cities public high school. I'd grade the beginning as a 'C', but now we're probably B+.

These are somethings that have worked for us; things have gotten easier as my son learns the system and improves his organizational skills. B+ is pretty good considering the dire funding situations -- aides in particular are hard to find.

We really focus on his "Planner". Dad tries to review all kids planners every day. Stickers and credit for writing things down, especially when assignments are handed out and when they are due. It took about 1 week but now all use planner well.
We use his planner to communicate with his Aides. I think there's some benefit to this. In our school system we cannot contact an Aide directly.
Wrote 1 page dossier on him for teachers to read. They don't get much information on students.
We read the parent portal web site regularly. It's not great software, and I think the teachers struggle to make it work, but it's better than nothing.
His teachers do very well with email. Phones and meetings are a lost cause -- but email works very well. I didn't expect that, nice benefit.
In our IEP we requested gym every trimester. For our guy this is a big help. Physical activity helps him. We sacrificed Art and Technology (computer skills). The former is probably a lost cause, and the latter he gets at home.
We have a regular weekend slot for homework and a classmate/friend with somewhat similar disabilities joins him for this. I think this is helping both of them, it certainly helps my guy.
We are very aggressive on following up on missed assignments. The Parent Portal can help with this -- esp. prior to end of trimester it gets updated. We track down and do missing assignments.
I am surprised that he can do simple algebra and his basic physics equations. I didn't expect that. He does get help from an aide there, but he's still writing out the expressions and completing many of them. I think his science teacher feels we're exaggerating his disabilities.
His history teacher is relatively demanding, which is working well. Of course he's not evaluated at grade level, but to get a B he has to actually work. If he doesn't work, gets a D. This is a good opportunity to push his cognitive limits. It's a fight of course, he wants to scrawl some illegible roughly related words and move on. Even so, it's not that BIG a fight. For this class I review the topics myself, translate them into diagrams and notes that are very close to answering his study unit questions, then give him those to interpret. I think he's picking up some history, but mostly he's learning to read, interpret and write. (I'm also picking up some history. His "World History" class is light years better than what I had. (I've studied quite a bit of history since, but there's a lot to be said for a grade 9 level overview!)
He's done very well with adaptive sports and we continue to sign him up for those. He also does mainstream sports teams, so there's some push and pull there. Either way - real value.

Aspergers and crying: maybe not a career killer

2011-11-14T22:14:00.001-06:00

We're proud and happy with how boy #2 is doing in middle school. Teachers pleased, good grades, he seems happy to go to school. Still has trouble crying though. I think of it as an Aspergers trait; he cries when he's frustrated or upset.

I also think of it as significant career handicap. Maybe I'm overstating things ...

Why xxxx cried
... xxxx cried over just about everything. He cried at the beginning of Apple after Woz's father pushed his son to take more ownership of the company because he thought xxxx wasn't doing much work. xxxx went over to Woz's home and bawled his eyes out. Woz kept him on.
xxxx cried when his employee badge said #2 instead of #1 (which went to Woz), then ended up getting badge #0. He cried when Apple pushed him out of the company. He cried at Pixar during a battle with Disney. He cried when Time put the Mac on its cover instead of him. He cried when he saw the famous Apple "1984" ad for the first time. He cried about Windows "copying" the Mac. He cried over design questions, like when the iMac team put a tray-based CD drive in the machine rather than a slot-loading drive. He cried over deep issues of personal privacy, such as the moment his cancer first became public and shareholders were braying for information. He cried because he wanted the original Apple II to have a one-year warranty, rather than 90 days...

Of course xxxx was Steve Jobs.

So evidently a crying problem need not be a career killer.

As to whether this hypersensitive obsessively detail oriented creative with supreme synthetic skills and narrow interests had other Aspergers traits ...

Information wants to be licensed?

2011-10-30T09:55:00.001-05:00

We're always on the lookout for new therapeutic interventions, particularly behavioral interventions for our guys.

Since we're physicians, we're used to finding those interventions in handbooks, manuals and the like. Knowledge that comes with a creation history, but that is public.

Of course even in medicine that's not quite true. I've always been struck by how little ophthalmology, for example, is actually written down. Yes, there are lot of ophthalmology textbooks, but they seem to leave out a lot of the actual practice of eye care. Orthopedics was the same way. General medicine had the best public coverage.

In the 1980s medical-process patents began to appear in clinical practice [1], though, surprisingly, Congress actually moved to limit their impact in 1996. In Nursing care several "instruments" are owned by publishing companies and cannot be used without license.

There are similar issues in science, particularly in genomic research. The "iceman" (Otzi) genome is still a carefully held sequence, worth fame and grants to its owners. Archeologists are infamous for restricting access to ancient documents (ex: Dead Sea Scrolls).

So in the worlds of science, engineering and medicine there's a spectrum of open knowledge.

We're discovering that much of behavioral therapy for autism tends towards the closed end of this spectrum; many programs are patented and unpublished.

I'm unsure how important this is. It may be that patented programs are not only "secret" but also unstudied. Idiosyncratic therapeutic interventions may be harmful or wasteful (in this world, since time is limited, wasteful is harmful). Perhaps we're better off not knowing what's in them.

On the other hand, secret knowledge is yet one more obstacle to information sharing in the cognitive disability community. It's a part of a bigger problem that's getting more of my attention...

[1] Link intentionally made to a NEJM restricted access article.

Adaptive textbooks for special needs learners

2011-10-01T14:58:00.001-05:00

My #1 has two mainstream classes - science and history.

In the days of the lesser depression he is missing the aide service he needs to track the classes. I think we can work something out for science, but history is harder. His teacher loaned us a copy of his history text [1]; that was a bit of a trick since our increasingly impoverished schools no longer have textbooks for home use.

I find I can write a readable summary of a book chapter in about ten minutes. He can't read the chapter, but he can read my summary and use that to complete his homework.

I haven't been able to find anyone who has done something like this. I'm a bit surprised that

teachers don't do this
the state doesn't do this
foundations don't do this

I'll be doing it. If there's interest leave a comment and I'll find a way to make my summaries available.

I did find a single essay by a doctoral student written in 2005 that included some relevant legal information ...

Digital Textbooks and Students with Special Needs - Jennifer Courduff = Teachinghistory.org
For teachers, digital textbooks provide assistive technology in compliance with the Individuals with Disabilities in Education Act (IDEA, 2004). This law requires that assistive technology resources be made available to all persons with disabilities and provides funding to make these resources possible. In addition, Public Law 100-407, the Technology-Related Assistance for Individuals with Disabilities Act, requires that all students who are exceptional receive technology resources that support access to grade-level appropriate content...
... Digital textbooks are being developed using a universal design for learning (UDL) approach. UDL strategies do not water down content. Rather, complex content is presented using simpler language with supportive hyperlinks to definitions of cognitively difficult key vocabulary and concepts. Following UDL strategies, core content can be scaffolded to meet the cognitive levels of individual learners (1). Scaffolding content enables students with special needs to learn grade-level content within their zone of proximal development, thus providing content that is easy to understand while remaining aligned with curriculum standards (2)...

Personally I have no problem with "watering down" content. I do that every time I present my work to graduate students or senior vice-presidents.

The "UDL" material sounds interesting, but from what I can tell this is an aspirational academic enterprise. Nobody is actually making a UDL textbook of history for my son to use.

Guess it's just what I write then.

[1] Prentice Hall, World History, Connections Today.

Update 10/21/2011: I'm publishing my custom version of World History as I write it. You can get the latest version here, but it's being updated every week or so. No rights reserved.

High School: don't assume staff actually communicate

2011-09-28T21:09:00.002-05:00

#1 is now in High School. He seems to like it and we're proud of what he is doing. On the other hand, the school is short resources.

That's not a surprise. The lesser depression has been persistent. We were a bit surprised to learn, however, that at least one of his mainstream teachers didn't know much about his disabilities -- or even that he had an IEP.

We shouldn't have been surprised though. We're physicians, and we know docs have trouble communicating about patient care. I used to tell my patients to always copy notes and results and hand carry them between caregivers. It was by far the safest way to pass information.

So we've drafted a summary of #1 and sent it to all his teachers. Now they know a bit of his story, what his disabilities are, what he likes, what works best, etc. Seems to be helpful.

That leaves his aide(s). (Supposed to be plural, but it looks like he's got about 1/3 of an aide in 1 class.) Schools, for reasons I can guess at, make it very hard for parents to communicate with aides. Everything is supposed to go through the (overloaded) teacher.

There's a fix though. My son carries a "planner". We've started using that to pass messages to his aides through him. They write notes in the planner -- such as the assignments #1 invariably "forgets". (One advantage of a defective memory subsystem is that "forgetting" is an awfully convenient excuse.) Old paper and ink technology goes where email can't.

Update: Things get better.

No credit

2011-09-11T11:37:00.001-05:00

#2, Aspergers, wails and berates me for half the ride. Kind people glare at me. I am the worst father.

Then he climbs the big hill. He finishes it all. He is proud, happy. He will always remember this. He will remember how he showed his doubting father. It will empower him.

I will be forgiven.

No credit though.

Only satisfaction.

Guanfacine (Tenex) and working memory

2011-09-05T09:32:00.001-05:00

#1 takes both Ritalin and Guanfacine (Tenex and other trade names) - longterm. So I track research on both meds.

Ritalin is as well understood as any brain med. As best we can tell it's unreasonably safe and effective for ADHD, despite a trashy article in a pop science magazine.

Guanfacine, a second line med for ADHD also used (off label) for "explosive" kids, is much less studied than Ritalin. The proposed mechanisms of action are interesting, it seems to increase certain kinds of neuronal connections and to perhaps facilitate learning capabilities.

On the one hand, this is encouraging. Working memory deficits are a significant component of most developmental disorders of the brain. On the other, it's disturbing. When clinicians hear "increased cellular activity" in brains we think "cancer" and "seizure".

Fortunately, so far, there's no sign of that (though we're in early days). There is, however, continued research on Guanfacine's effect on working memory and task performance in primates. Studies have recently moved to using elderly primates, but results are mixed. As best I can tell from the abstract, this was a negative result (A typical child dose of Guanfacine would be .04 mg/kg) ...

Effects of the alpha-2 adrenoceptor agonist g... [Eur J Neurosci. 2011] - PubMed - NCBI
Alpha-2 adrenergic receptors are potential targets for ameliorating cognitive deficits associated with aging as well as certain pathologies such as attention deficit disorder, schizophrenia and Parkinson's disease. Although the alpha-2 agonist guanfacine has been reported to improve working memory in aged primates, it has been difficult to assess the extent to which these improvements may be related to drug effects on attention and/or memory processes involved in task performance. The present study investigated effects of guanfacine on specific attention and memory tasks in aged monkeys.

Four Rhesus monkeys (18-21 years old) performed a sustained attention (continuous performance) task and spatial working memory task (self-ordered spatial search) that has minimal demands on attention. Effects of a low (0.0015 mg/kg) and high (0.5 mg/kg) dose of gunafacine were examined. Low-dose guanfacine improved performance on the attention task [i.e. decreased omission errors by 50.8 ± 4.3% (P = 0.001) without an effect on commission errors] but failed to improve performance on the spatial working memory task. The high dose of guanfacine had no effects on either task. Guanfacine may have a preferential effect on some aspects of attention in normal aged monkeys and in doing so may also improve performance on other tasks, including some working memory tasks that have relatively high attention demands.

The doses are interesting here -- much lower than a human therapeutic dose and much higher. They were also looking at a one time dose effect. This reads like a mini-pub as a research team gears up for the real research. It's a modest investigation, and they basically didn't find anything. (Give the cost and ethics of primate experimentation one assumes there's much more to come.)

So the results are pretty meaningless. What's interesting is that the research is gearing up.

We should learn a lot more about the risks and benefits of Guanfacine over the next five years. For now I'm comfortable with our son's use of this medication.

The unpredictable upside

2011-09-04T08:14:00.001-05:00

Spin type school combination locks have never worked. It didn't help that #1 liked the idea of a key. Alas, despite his remarkable reliability with his phone, he kept losing keys.

This year he likes keys less. It's part of not wanting to be different, which is both unfortunate (he is different) and another powerful behavioral lever.

So I geared up to again try to teach him the spin lock for school use. I drafted a table with directions on the left, drew the spin direction, and did the combination in large font in a separate column. Working to separate the idea of the common actions from the unique combination.

Next came the question of incentive. This is an anxiety producing activity coming from his father. He does very little of this nature without a short term reward. Computer time alone was not enough. He wanted a MacBook Air. We compromised with an account on my Air -- a machine that he's lusted to touch and that has been mine alone.

He did it in one. Then he did it again.

I can predict what my neurotypical child can and can't do. I can't predict him.

Adolescent special needs - the epic trip

2011-08-31T21:40:00.001-05:00

35 friends and relatives across five sites. Two provinces and 7 states. More than 3,300 miles of driving. It was an epic family car trip.

A car trip with 1 dog, 1 neurotypical child, and two boys on the spectrum. Two boys, and two hormone wracked adolescent.

It was a great holiday. We had no need of a lawyer, a physician, a veterinarian, a mechanic or a psychiatrist.

So it can be done, assuming one is a special needs veteran and accustomed to crises that might topple a regular parent. The mixture of motion, of car time and time limited but intense visits seems to work for our guys. It's not something I remember from the days I read parenting texts, but we're data driven. We go with what works.

The trip is an opportunity to reflect on the autistic adolescent. On the one hand, the desires are intense, and there's a complex mixture of the adult and the child. On the other hand, intense desires are also opportunities for the Machiavellian parent (as we must be). They give us new challenges, and new levers.

More problematically, behaviors that could be ignored in a fresh faced child are more sensitive in a strong jawed neo-adult who needs to start shaving. Punching was never acceptable, but now it's dangerous.

The upside is that we're seeing an overall improvement in most behaviors. I don't know why that is. Maybe it's just practice, but I'm hoping his brain is better able to sequence events, to connect action with reaction, and perhaps even to anticipate consequences, to be able to plan towards an end. The improvements, at this time, are pulling ahead of the downsides of adolescence.

Only 80 years to go now ...

Intrauterine contributors to autism

2011-07-04T15:44:00.001-05:00

A recent twin study (NYT.com) claims that only 40% of what the researchers considered "autism" was clearly genetic. Previous studies estimated a 90% rate. The greater causes was something occurring prior to birth.The researchers further claimed that most (about 58%) of the environmental causes were shared.

These are remarkable claims, and they will require remarkable evidence. I am very skeptical.

If there is a common intrauterine cause of brain injury, however, we do need to look again at obstetric ultrasound.

See also:

Be the Best You can Be: Ultrasound, neuronal migration, and autism (8/2006)
Gordon's Notes: General weirdness on the net: ultrasound, autism and satire (An essay was published in 2006 on ultrasound, school violence, and autism. It was a satire.)
Gordon's Notes: Ultrasound and the developing brain – lessons from manipulation of mouse neuron (1/2009)

GettingHired - a job search site for persons with disabilities

2011-06-13T22:59:00.001-05:00

GettingHired - Jobs for Disabled is a job search site for persons with both physical and cognitive disabilities.

I've added it to my custom search engine, which, Google tells me, now indexes 17 million pages.

Highland Park High School Special Education

2011-06-10T23:36:00.001-05:00

Highland Park High School Special Education is a Facebook page for parents, family and students of a St Paul High School's special education program.

Adolescent computing and OS X Parental Controls - training wheels

2011-05-06T22:27:00.001-05:00

My 14 yo's computer skills have continued to be a real strength. Of course, being both 14 and having disabilities in executive function, he does not always use them wisely.

Years ago I hoped the iPhone and other iOS devices would provide app-restricted services while limiting web access. Sadly, I've been disappointed by Apple's deceptive iOS "parental controls" [1]. That didn't work very well. On the other hand, monitoring his computer use and punishing misuse isn't working that well either. We can't be looking over his shoulder everywhere -- such as in his school room.

So now I'm trying Plan B, an educational program of trial and reward based on techniques that have worked before.

I've set up an account on a machine using OS X Parental Controls [2]. I've whitelisted a number of sites he's interested in, including bing.com [3]. I give him 10 minutes every day to use the machine without me watching. When he's done we review his history and log files together (in Parental Control mode history files can't be wiped -- he learned that trick at school).

If he's used the computer responsibly, he gets some reward tokens. If he hasn't he doesn't get any and I make the whitelist more restrictive. Since I'm trying to extinguish the bad behavior I keep things dull.

He's keen on this, and so far he's doing well. My plan is to keep broadening the list and reducing the parental controls, rewarding self-control over time.

I'm sure it won't fully succeed, but at the very least I'm hoping he'll learn some discretion. If he can think for a second before acting, he may avoid a lot of trouble.

[1] I'm trying various channels to get Apple to improve, including contacting legislators and this email to Consumer Reports ...

I'm writing to ask you to include 'parental control' functions in yuor next evaluation of smartphones.
We've been very disappointed in the parental controls Apple provides; in some ways they're worse than nothing. It seems we can limit web access by disabling Safari, but many, many apps contain embedded browsers. Once a child has access to an embedded browser, they can usually find their way to a Google search and abundant porn.
Embedded browsers are found in encyclopedias, MLB (major league baseball), reference works, educational materials, and many others.
The fix is simple. Apple needs to provide a parental control that restricts embedded browsers. Until they do, iPhone parental controls are a deceptive fake.
If you include parental control functions in your evaluations, Apple and other vendors will pay attention.

[2] They're mediocre at best, but they're (barely) enough for this experiment. See updated documentation below.
[3] Though Bing's parental controls are even worse than Google's he's less familiar with Bing so he doesn't dodge them as readily.

Update 5/29/11: This is working better than I'd hoped. The huge advantage of Bing.com over Google.com is that Bing doesn't use https. So OS X Parental Controls show a meaningful history of sites visited. I'm going to explicitly block Google.com but permit Bing.com.

Update 6/12/11: History files cannot be wiped in the most strict form of parental controls. In the "automatic detection" mode they can be wiped. See Gordon's Tech: OS X Parental Controls Review - State of the art in OS X 10.5 and 10.6.

Adult prognosis of autism syndromes - expert anecdotes

2011-04-20T21:06:00.000-05:00

I am not aware of any good academic studies on the adult outcomes for children with autism syndromes. The presumed diversity of the underlying injury and recovery mechanisms makes hard research even harder. So the best we can do for now are anecdotes from clinicians with longterm experience ...

Experts Discuss Autism's Long-Term Course - NYTimes.com

Several readers had questions about the range of adult outcomes in autism and how treatments may affect outcomes in individual children....

More and more individuals with autism are now able to function independently as adults. This is a major change over past decades, probably reflecting earlier diagnosis and more effective treatments. There is a very good summary of this in a chapter by Patricia Howlin in the Handbook of Autism (2005, Wiley).

Unfortunately not every child gets better. Sometimes the outcome seems to relate to the severity of the autism in childhood. Individuals whose disability is more profound continue, as adults, to need considerable support and help. It is unfortunately the case that for this population, services are often minimal, research is sparse and resources are lacking. The federal government has identified this as a priority area in autism work, and rightly so.

But even when we are fairly optimistic about an individual child, he or she may not do well as an adult. This is one of the reasons those of us who have been in the field for a long time are very careful about predicting the future to parents. We can only talk, in general, about what on average are good or bad prognostic factors.

For individuals with autism who can go on to college, a number of resources are available on the Yale Child Study Center Web site, including books and links to programs. Options range from small and very supportive programs specific to individuals with autism and related disorders, to traditional colleges and universities. Our book, “A Practical Guide to Autism,” also has a chapter on the topic of adults and discusses college services.

Daily living and adaptive skills, along with organizational skills and abilities, become even more important during the college years. It is important that students and parents realize, though, that changes in the law (the Americans With Disabilities Act now applies to such children) mean that college is not a right, and that those with autism can and do get expelled. Issues relating to sexuality and apparently inappropriate behavior are frequent reasons cited.

Minnesota Life College adding community college features ...

2011-04-16T21:24:00.001-05:00

This reminds me of a New Mexico residential training program I blogged on. I found it from a link on the Autism Speaks MN adult services directory ...

Minnesota Life College
... Beginning in the Fall of 2010, Minnesota Life College will add a new component to our program curriculum. In partnership with Minneapolis and Community Technical College (MCTC), we will provide our students the opportunity to experience a traditional Community College or Vocational Technical program, through a specifically designed curriculum that includes the ACCUPLACER test, study strategies, organization of work and time, tutoring and a 2 credit ‘Strategies for College Success’ course at MCTC. This component is designed for the MLC student that wants to see if a Community College or Vocational Technical program is the next ‘right’ step for them during or after MLC...

Transition Tool Kit from Autism speaks

2011-04-16T21:07:00.001-05:00

Autism Speaks [1] has put together a Transition Tool Kit targeting families with special needs children ages 14-22. The goal is to support transition into the community when school services end.

The kit is downloadable, but as best I can tell the kit is the same set of PDFs that are found on the above page. An "online appendix" is a curated set of links to additional information.

The kit is pretty generic, because state rules vary [2]. Autism speaks has state resource guides (ex: MN) with sections on adult transition. Minnesota's data is a well done list, and it includes a state specific transition guide.

I'm including all of MN specific information in my MSP special needs custom search engine.

[1] In the past they've been associated with the immunization obsessed, but I wonder if they're trying to get clear of that crowd.
[2] At some point, do we relocate to a state with better services? What happens when millions of retired adults begin driving their mobile homes around the nation, desperately seeking dwindling services for their adult children? Just wondering.

Adapting to fewer resources for special needs children and adults

2011-04-16T20:46:00.001-05:00

The future is looking kind of gloomy for most Americans ...

Care of special needs adults in post-employment America
... the Great Recession grinds on. The percent of employed adult Americans (employment-population ratio) is now back to where it was in 1976, when most women weren't in the workforce. The annual incomes of the bottom 90% of US families has been flat since 1973...

Some Americans are astoundingly wealthy, but most of us are not. The direct and indirect costs of care of a disabled child, or adult, means special needs families were stressed even when American social supports were relatively robust. Now things are getting harder ...

... Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.
... Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin...
... Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”...

We are now seeing long group waiting lists in Minnesota, yet we aren't yet seeing the direct cash transfers to families that are reported in Connecticut, Arizona, Vermont and New Hamphsire. In place of group homes we now have "housing access services" -- suited for persons who can live independently.

We're going to have to figure out how to adapt to this. I have ideas, but I need more people ...

The twilight of "schizophrenia"

2011-04-14T05:33:00.001-05:00

Neurologic disorders, alas, are not going away. The concept of "schizophrenia", however, is shuffling off the stage.

Today's obit comes from Kwang-Soo Kim, a stem-cell scientist at McLean Hospital in Belmont, Massachusetts: "These disorders are not really disorders. There's no such thing as schizophrenia. It's a syndrome. It's a collection of things psychiatrists have grouped together."[1]

Just like autism. Autism is a collection of "things" psychiatrists have grouped together, sustained by law, regulation, tradition -- and the current lack of a better alternative.

[1] Schizophrenia 'in a Dish': Scientific American 4/13/2011

See also:

Victory: The war against 20th century psychiatric diagnoses is all but won

Google Custom Search - Special needs services in Minneapolis and St Paul

2011-04-11T22:29:00.002-05:00

I'm still experimenting with this, but I've created a Google custom search engine for special needs services and activities in the Twin Cities region: Google Custom Search - Special needs services in Minneapolis and St Paul.

I've also embedded the search engine into the right hand side of my blog page.

Lifepages - a MSP catalog of activities and resources for disabled persons

2011-04-11T22:02:00.001-05:00

This was mentioned in a recent Highland Friendship Club meeting ...

Lifepages
... Life Pages was developed with people with disabilities in mind, but the site is truly useful for everyone. Life Pages is a great way to keep track of activities around town that you might not otherwise know about. Anyone can create a profile, which allows you to save favorite activities and sign up to receive e-mail alerts when new activities are added. The site has one feature, invitations, which is available only to Partners In Community Supports (PICS) member agencies...

The site footer says "copyright 2005" and the activities calendar was empty. I browsed some categories and saw some I know, but the search function doesn't seem to work.

On the other hand a Google search of the form

site:lifepages.org [search terms]

works well [1]. It allowed me to find the entry for the Institute on Community Integration ..

Home | Institute on Community Integration (ICI)
... Welcome to the Institute on Community Integration. We are a federally designated University Center for Excellence in Developmental Disabilities (UCEDD), part of a national network of similar programs in major universities and teaching hospitals across the country.
As a UCEDD, the Institute is funded under the provisions of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 by the Administration on Developmental Disabilities in the U.S. Department of Health and Human Services. The federal law provides funding to several other Minnesota organizations: the Minnesota Governor's Council on Developmental Disabilities and the Minnesota Disability Law Center...

Clearly it's an old site, but there's still a great deal of information there.

[1] Or you can try this custom search engine I'm playing with ...

The expectations trap

2011-02-07T19:15:00.000-06:00

Four months ago we learned lessons from two family bicycle outings. One was an educational failure. The follow-up was a memorable success.

No denying, I was proud of that one. I wouldn't have thought it possible just three years before. If we weren't willing to risk failure, we wouldn't established a new baseline.

That's why I was willing to try another crazy idea. This time we tried a mass nordic ski event after dark in unfamiliar territory. This went well beyond last year's Nordic ski resort.

We applied what we'd learned. We studied satellite maps of the ski route and the surrounding territory, developing and revising our primary and backup plans. We researched parking in detail. We took a car and drove the route at night -- that's how we learned event map's major parking area was now a massive hole in the ground. We adjusted our plans accordingly. I took both our special needs guys with me on the event day to collect our race bibs -- so they could see the parking and starting area in daylight.

We left early on event day, which meant we got the prime parking garage rather than our fallback option. At the event we adjusted plans; one of our guys needed to race, so we aborted a rendezvous and left ten minutes early.

It was easy. The only glitch was a bit of overheating while fussing with race bibs indoors. I expected to need more of our contingency plans. As it was, I had only to track the son who's prone to getting lost. His brother with the oddball savant visual abilities raced far ahead, and, as expected, materialized from darkness whenever we reached a stopping area.

It was easy, but maybe it was too easy. Now I need to wonder if I've fallen into an expectations trap.

The expectations trap is what happens around 9th grade in most schools. Instead of the slow, tedious, work of developing reading and other academic skills, teaching focuses on "social skills". These can be fun for all involved, but for some it's too easy. They could do better. The expectations trap is inside the comfort zone; it closes options too soon.

I think I need to move my expectations up.

National Sports Center for the Disabled - summer and winter recreation in Winter Park, Colorado

2011-02-07T19:14:00.001-06:00

Colorado's National Sports Center for the Disabled is an amazing resource.

... Founded in 1970, the National Sports Center for the Disabled's mission is to positively impact the lives of people with any physical or mental challenge through quality adaptive recreation programs in over 20 sports. The NSCD’s impact on lives is direct, immediate and visible. Over 23,000 lessons are provided annually...

The NCSD is located in Winter Park Resort, Colorado (map info - route 40 west of Denver). They serve our community ...

ADD, Amputation, Arthritis, Autism, Behavioral Health, Bone Disorder, Brain Injury, Cerebral Palsy, Deafness, Developmental Disabilities, Diabetes, Down Syndrome, Epilepsy, Fragile X, Hemophilia, Learning Disabilities, Little People, Multiple Sclerosis, Muscular Disorder, Muscular Dystrophy, Nerve Disorders, Neurological Disorders, Paraplegia, Post-Polio, Quadriplegia, Respiratory Disorder, Spina Bifida, Spinal Cord Injury, Stroke, Substance Abuse, Vision Loss/Blindness...

Of course the winter activities (2010 brochure) are amazing. It's the place I'd take my family for a snowboarding or skiing vacation. The NCSD will arrange for travel package reservations and they offer scholarships. They offer the "NCSD Broome House" condo reservations particularly for NCSD participants.

There are summer options too (2010 brochure)...

... NSCD Sports Camps, rafting, kayaking, canoeing, special camps, horse pack trips, therapeutic horseback riding, mountain biking, overnight river trips, fishing, camping, and rock climbing...

Definitely a resource worth remembering.

So why am I just learning about This now? It's been around for forty years.

There's something broken somewhere ...

What can we learn from extreme dog training

2011-01-24T21:08:00.001-06:00

Two stories about what dogs can learn.

The first is about teaching word sounds to a border collie. It is, as best anyone can tell, a true story.

Dog Might Provide Clues on How Language Is Acquired
He bought Chaser as a puppy in 2004 from a local breeder and started to train her for four to five hours a day. He would show her an object, say its name up to 40 times, then hide it and ask her to find it, while repeating the name all the time. She was taught one or two new names a day, with monthly revisions and reinforcement for any names she had forgotten.
... In three years, Chaser’s vocabulary included 800 cloth animals, 116 balls, 26 Frisbees and a medley of plastic items...
... The 1,022 words in Chaser’s vocabulary are all proper nouns. Dr. Pilley also found that Chaser could be trained to recognize categories, in other words common nouns. She correctly follows the command “Fetch a Frisbee” or “Fetch a ball.” She can also learn by exclusion, as children do. If she is asked to fetch a new toy with a word she does not know, she will pick it out from ones that are familiar...

The second story is from The Awl (via Brad DeLong)...

It’s a week before the biggest day of her life, and Anna Williams is multitasking. While waiting to hear back from the Ivy League colleges she’s hoping to attend, the seventeen-year-old senior at one of Manhattan’s most exclusive private schools is doing research for a paper about organic farming in the West Bank, whipping up a batch of vegan brownies, and, like an increasing number of American teenagers, teaching her dog to use an iPad.
For the last two weeks, Anna has been spending more time than usual with José de Sousa Saramago, the Portuguese water dog she named after her favorite writer...
Anna takes José Saramago’s paw in her hands and whispers in his ear. He taps the iPad and the web browser opens. José Saramago gives a little yelp.
“It’s entirely conceivable that a dog could learn simple computer functions,” says Dr. Walker Brown, the director of the Center for Canine Cognition, a research facility in Maryland. “Word processing, e-mailing, even surfing the web: for many dogs, the future is already here”...

Alas, the second story is a parody. It is fiction. After reading the first story though ...

Given enough time, patience, and interest a dog can learn the rudiments of language. It goes slowly. It takes insane persistence (Is Pilley Aspergerish?), but one word a day adds up over time. I'm sure someone, somewhere, is now training their dog to use an iPad. They will make the Awl story partly true (maybe not the word processing though).

There are lessons for those of us who work with special needs children ... teens ... and adults.

My eldest's verbal processing tests at the pre-primer level. He reads at somewhere between third and fourth grade. And yet, he does truly remarkable things with his iPhone. He continues to learn. HIs learning is slow, but faster than Chaser. Alas, he's not as keen -- unless one were to count the increasingly sophisticated iPhone games he plays.

Alas, he has only a few years of formal education left. I have some concerns, even now, about how much will be done in the next few years. "Life skills" are needed, but he is not going to stop learning at 19. I think, given time, he could read at the fifth or sixth grade level -- which starts to work him into the normal range. I suspect he'll never have strong receptive language, but he may do more with reading and writing. He already converses more effectively by text than by spoken language.

His digital skills are exceptional -- an order of magnitude better than some of his linguistic reasoning skills. There are things to work with.

Somehow I have to figure out how he will continue to be taught, and to learn, until he's at least fifty ...

Victory: The war against 20th century psychiatric diagnoses is all but won

2010-12-28T18:45:00.001-06:00

I started rabble rousing about the fallacies of psychiatric classifications (diagnoses, nosologies) about eight years ago. Five years ago I went public, since that time I've labeled 29 posts as "diagnostic definition" related [1] including my most recent rant...

... We're due for another DSM edition, but I doubt that will be any better.
The good news is that in the last 8 years it's become clear to every researcher that all of the common neurospychiatric conditions, from "ADHD" to "ODD" to "Autism" to "Aspergers" to "Bipolar disorder" to "Schizophrenia" are very rough categorizations of thousands of different "phenotypes" (where a phenotype is the end-result of the interaction between genes and environment) that are themselves dynamic over the lifetime of the brain. (Even after adolescence, we see major changes in schizophrenic symptoms between 20 and 50.
Over the last 3 years we've seen that many different combinations of diverse gene variants, combinations, "malfunctions" and prenatal genetic express modification can produce superficially similar clinical presentations that we squeeze into the garbage bins of "mental retardation", schizophrenia, and "autism spectrum disorder". Most surprisingly, many brains with extraordinary genetic disorders appear normal.
This classification problem isn't simply an annoyance for researchers and industrial ontologists. It has important legal, educational, financial and, yes, clinical implications. The legal, educational and financial implications are large but outside the scope of this post. Suffice to say there is a reason that the diagnosis of "autism" has exploded while the diagnosis of "mental retardation/DCD" has shrunk (clinically speaking both diagnoses are about equally useless)...

I think I can stop now. When Scientific American starts to talk about the problems with our current classifications of mind and brain disorders the war is over (emphases mine) ...

Slipping the 'Cognitive Straitjacket' of Psychiatric Diagnosis
... In a recent article in the American Journal of Psychiatry, a Swedish team of researchers led by Paul Lichtenstein studied 7,982 twin pairs. They found a heritability of 80% for autism spectrum disorders, but also found substantial sharing of genetic risk factors among autism, attention deficit hyperactivity disorder, developmental coordination disorder, tic disorders, and learning disorders.
In another recent article in the American Journal of Psychiatry, Marina Bornovalova and her University of Minnesota colleagues studied 1,069 pairs of 11-year-old twins and their biological parents. They found that parent-child resemblance was accounted for by shared genetic risk factors: in parents, they gave rise to conduct disorder, adult antisocial behavior, alcohol dependence, and drug dependence; in the 11-year-olds these shared factors were manifest as attention deficit hyperactivity disorder, conduct disorder, and oppositional-defiant disorder. (Strikingly, attention deficit disorder co-occurs in both the autism spectrum cluster and disruptive disorder cluster.)
... , DSM disorders do not breed true. What is transmitted across generations is not discrete DSM categories but, perhaps, complex patterns of risk that may manifest as one or more DSM disorders within a related cluster. Second, instead of long-term stability, symptom patterns often change over the life course, producing not only multiple co-occurring diagnoses but also different diagnoses at different times of life.

Please read the above excerpt. I tear up looking at it.

This is progress! This is what Osler did for medicine in around 1900 when he tore down the outworn and deceptive strictures of 19th century medicine. He had to throw out the old ideas to move medicine forward. At long, long, last psychiatry, and neurology, are ready to be refactored.

The battle may rage for years, but the war is done. It's just mopping up now.

Now we can move forward.

[1] Greene's Explosive Child, by the way, led the way in 2005 by setting aside non-useful ICD-9 and DSM classifications in favor of a label that tied symptoms to effective management.

Schizoprhenia and a suspicious retrovirus

2010-12-01T19:20:00.001-06:00

Researchers have long looked for an infectious cause of schizophrenia, especially because of a relationship between a child's birth month and the later development of schizophrenia. The focus though has been on a maternal infection.

Now there is interest in an endogenous retrovirus as a contributing factor in the development of schizophrenia. This virus is present in the DNA of most of us, though there might be secondary infections triggers that would activate a quiescent retrovirus. It's quite speculative, but noteworthy.

Naturally everyone who wasn't already looking for an endogenous retrovirus in autism will redouble their efforts.

As always, there's a large caveat about this type of research. Autism and schizophrenia are labels we place on a variety of cognitive disorders that likely have diverse causes, courses, and therapies. Even if this early work bears fruit, not all of what we currently label "schizophrenia" will be related to a retroviral infection.

The hardest behavioral intervention

2010-11-25T20:21:00.001-06:00

Our Husky mix loves to play hide and seek. She stalks the gate, bolts through an opening, and runs with joy. She races across the neighborhood then hides for the seek. She cannot be seen, she is a natural predator. She'll do this for an hour or so, waiting for us to walk nearby then bolting past us. Eventually she's sated, and she comes to us. Until recently she got a treat on the return, because our expensive experts told us that's what we needed to do.

Running, playing with the pack, eating the treat. Doesn't get better than that. We spent more money than I care to think about on this problem, consulting with the best experts. None of the expert advice worked.

Kind of like with our eldest. Almost everything that's worked with him we invented.

Lately, we've been trying the hardest behavioral intervention of all our our mutt. Doing nothing. Extinction is the technical name, it's how to train husbands, exotic animals, and special needs persons. When she runs, we don't pursue her. We leave the gate open. We go for a walk. We wait. It's painful because, of course, there are cars out there. Even very smart dogs don't really understand cars; even seeing eye dogs don't get them.

She's coming back sooner now. We greet her with subdued affection and without treats. If she survives the cars, I think this will work. Of course if she ever actually ignores an open gate and comes to us, she will be rewarded. (We also stopped playing chase games. That was my bad.)

Dogs and humans - same difference. We're in a good spot with our #1 child now. It's been that way for a few months; but there was a bad time before it. There will be more bad times ahead; probably worse than those we've known. That's our life. It's a way go get old fast, and maybe wise too.

During this good time, we've been applying extinction methods on some obsessive behaviors that caused us significant distress. We don't deny the behavior, instead we a version of it officially approved and regulated - though with an undertone of muted disappointment. We've stripped the behavior of all emotion and context. It's not gone entirely; it may never go. It is, however, very much diminished.

Extinction is a good behavior modification technique. It's very hard to apply, but sometimes you have to go with what works.

Apple's iPad/iPhone App store has a special education section

2010-11-23T22:04:00.001-06:00

The iPhone/iPad App Store has a section devoted to special education. I was able to find some announcements from the end of October, so it's quite new.

There's a lot there, from sign language to communication to accessible readers to language development apps.

This opportunity to market and sell focused special needs apps could be a very big development. I'm excited, I've written before about our own experiences with my son's iPhone, including the weaknesses in iPhone parental controls. He's probably moved beyond most of these offerings, but we'll be examining them in more depth. (Lately he's been using the money to earn to buy games, which is an improvement on using it to buy candy.)

Livescribe Echo note taking pen - records and indexes lectures

2010-11-22T12:01:00.001-06:00

Journalists love the Livescribe Echo smartpen, a pen/recording/digital ink combo. It's a bit of a specialty item for journalists, but for Asperger's and other special needs students I can see how it might be helpful.

See:

Understanding a different mind: memory organization and receptive language

2010-11-20T12:31:00.001-06:00

I wrote about my son's memory and processing disabilities two days ago. Today I read a Zimmer article on the routers in our brains, and how consciousness goes offline during even simple decision making tasks. I think we'll hear more about this "router" dysfunction hypothesis, particularly in the context of autism, schizophrenia and other disorders of cognition and consciousness.

The "offline when making decisions" model is something I'll be watching for in him.

Understanding a different mind: memory organization and receptive language

2010-11-18T22:27:00.001-06:00

As my oldest son moves into his adolescence, his mind continues to change. Observing him, I get new insights into how his mind works.

He has a pen pal now, a young woman who is studying special education. She started writing him as part of a school program, and has continued on. She is a wonderful correspondent.

My young adolescent tells her stories to impress her. They aren't, however, true stories.

They are generally plausible stories, no more or less impressive than the things he actually does. Often they are things he has done, just not things he has done recently. On the other hand, he omits adventures that I, in his place, would certainly include.

I think he's dissembling a bit, but mostly I think he doesn't really remember what happened yesterday. He may remember it in detail six months from now, but at the moment it's lost to him. So, like an Alzheimer's patient, he fills in the gaps. He tells a story.

His memory dysfunction is a profound handicap all by itself.

His inability to process speech is probably related to this memory dysfunction. It's not usually obvious to anyone, even to us, but he struggles to process even relatively simple sentences. He will often react negatively to a request, but, if he's given a minute or two to think about it, he will usually reverse himself. I think he needs time to try to reconstruct the sentence, to understand its meaning.

Curiously, as his reading slowly improves, largely due to his email and texting, his written communication is becoming stronger than his verbal communication. He understands ideas that are written as words better than the same ideas spoken aloud. He can read and reread printed text, gradually building understanding and reinforcing his limited short term memory. Spoken words are hard to reprocess.

He has other disabilities, but also some useful strengths. He's quite good with his iPhone, and with software and devices of every variety. Already his calendar, which I can edit from my desktop, is turning into a history of what he has done as well as what he is going to do. He takes hundreds of pictures of construction vehicles (an obsession), but in time the phone photo library will become a history of things he has done, places he has been. We often discuss things by text message; I think he finds that easier than spoken communication.

The phone record, including a record of where he and his phone are, may have other value as he gets older. Many cases of false imprisonment seem to involve people like him, people with such disordered memories that they can choose guilt for any crime. His prosthetic phone memory may protect him.

Autism after childhood - a profile of Donald Gray Triplett

2010-10-19T19:24:00.001-05:00

Impressive.

John Donvan and Caren Zucker, writing for The Atlantic, have profiled Autism’s First Child - Donald Gray Triplett now aged 77.

Unlike some other media portraits, there is no doubt Mr. Tripplett has lived with one of the 10-500 variants of brain development we call "autism". Indeed, he and his caregivers defined the syndrome. The writing is respectful and sympathetic, but not sentimental. Mr. Triplett is not typical, but then is any autistic person typical?

Somehow, despite the story of an autistic savant who grew up in Forest Mississippi, they never mention Forrest Gump. I understand why they dodged that trap, but there's more than a passing resemblance.

The article is a legitimate work of science, in the same sense as Atal Gawande's analysis of medical cost variation for the New Yorker. This kind of qualitative study can't be published in today's shriveled medical journals, but this is work that identifies the failures of our presumptions.

Mr. Triplett, for example, learned to golf at 23 and to drive at 27, and he became a compulsive international traveler at 36. He never, however, became "normal". This article illustrates how poorly we understand the lifelong natural history of the injured, healing, and evolving brain.

The article also introduces us to the somewhat spectrumish researcher Peter Gerhardt. Gerhardt, a speaker for Spectrum Training Systems (WI), is one of the very few American researchers who studies autistic adults. (Yes, medical science does have structural problems.)

Gerhrdt, we're told, is developing a "program" focused on "adolescence to adulthood" at New York's (ABA intensive) McCarton School. I followed up on that lead, but unfortunately he doesn't have a blog, though he does have a public Facebook page.

Dr. Gerhardt appears to have some ongoing relationship to the Virginia based Organization for Autism Research, the "only autism organization which focuses solely on applied research".

This is must read material for autistic persons, friends, families and caregivers. It's also a posthumous testament to the mad skills of Donald Gray Triplett's parents.

Google Scribe for special needs writing?

2010-09-18T18:35:00.000-05:00

I'm typing this post with helpful from Google Scribe. As I type I get a popup list that lets me type a number or hit enter to autocomplete my sentences. It even suggests phrases based on what I type. I used to use something like this on my old Palm III; it was helpful there but it's somewhat distracting when I have a keyboard.

Lee Matthews has a good description ....

Google Scribe bookmarklet puts powerful autocomplete anywhere you enter text on the Web

... Ever wish you could leverage the power of Google Suggest anywhere?...

Those users might want to check out Google Scribe, a slick new Labs offering that brings Google's suggestion magic to any text entry field on the Web. Just visit the Scribe page and drag the bookmarklet onto your bookmarks bar, head on over to your favorite social site like Facebook or Twitter, and give it a go!

Once you click your bookmarklet, you'll see an activation notice appear. As you type, Scribe will display a drop-down list of suggestions, just like Google's search box does. You can press Enter to apply the first suggestion or 1-0 to pick any option in the list (or use your mouse if you prefer). Google Scribe also offers sorting options, and you can set it to "always on" or "on demand" mode...

For my test I installed the Google Chrome scribe extension, but I believe the bookmarklet will work with Safari. You hit Enter to accept the top suggestion with a space, a number to choose another, Esc to hide suggestions and tab to choose without a space.

I think it will work even if you're not logged into Google, though I expect a future version will learn from the words someone uses.

This technology is obviously helpful when doing small device text entry, but for a special needs writer with limited spelling skills it may be very interesting at all times. I'm going to try it with my son the next time he's working (under intense direct supervision!) on his Facebook page.

Lessons from two family bicycle outings

2010-09-18T18:15:00.005-05:00

We did two family bike outings [1] recently. One was a flop. The other was a great success.

We have few pictures of the flop, lots of pictures of the success. The children watch the pictures on various screens. That's how we create (false) memories of perfect childhood.

"What is the secret to happiness, Oh Exalted One?" said the student.

"Editing." said the master.

The fiasco came first. Actually, it wasn't a fiasco -- but only because we bailed.

"What is the first lesson of special needs adventures, Oh Great One? said the student.

"Know when to fold 'em" said the master.

We should have known better. Actually, we did know better. I just forgot. I chose a new route we'd never explored. I didn't measure distances carefully. I didn't adjust when the weather turned hot and humid. I wasn't sure of the exact route, so we I revealed anxiety inducing uncertainty early (the captain must always know). I didn't outline the rules well enough, and I didn't specify queuing order.

Inevitably we had meltdowns. Mercifully the wisest one declared it was time to bail, even though I wanted to push on. We got back to the car, drove for ice cream, didn't have a bad day overall. Hours of preparation, 25 minutes of riding, but it could have been a lot worse.

When we did the postmortem it we knew we were off our game. Time to do better. We'd registered for the big St Paul Classic bicycle tour, so we knew another chance was coming. This time we remembered our lessons.

We studied the route in detail, using direct surveillance and satellite images and maps. We tracked the forecast. One week before the ride, in good conditions, we took the kids for our target distance on a representative stretch. We planned a van drop off point, so the kids would ride the target 6.5 miles without a turnaround. I took son #1 from our house to the start 1 day prior, using a route I'd researched and memorized and printed for him. We took all the kids for a car tour of the entire route -- so that two of them would know the full route was too long.

We had snacks. We had liquids. We had firm queue rules - son #1 and son #2 to be separated by mother #1. Son #1 had a phone in a saddle bag. Everything was ready in the garage.

On the day of the ride we were dynamic -- adjusting departure to suit son #2 morning malaise. We adapted and returned to the plan.

It was fantastic. Every child met their goal tired and happy. Son #1 did the 17.5 mile loop - even I got some exercise when I sprinted from the van group to catch him. (He could go ahead because he's oddly cautious and he's a wizard with his iPhone -- not something that fits his measured IQ).

Complete victory. Based, of course, on lessons from a fiasco.

Some people have to spend a fortune to climb Mt. Everest to test themselves and rise to great challenge. We only have to register for a bike ride. An unexpected advantage of the special life.

[1] Teaching two kids on the spectrum to ride bikes was one of the substantial achievements of my life.

Rethinking neuropsychiatric diagnoses

2010-09-18T14:30:00.001-05:00

I started bemoaning the classification (aka ontology, nosology) of neuropsychiatric disorders about 8 years ago. I'm not the only one. One of the things I liked about Greene's Explosive Child book is that he is clearly unimpressed with the DSM IV nosology.

We're due for another DSM edition, but I doubt that will be any better.

The good news is that in the last 8 years it's become clear to every researcher that all of the common neurospychiatric conditions, from "ADHD" to "ODD" to "Autism" to "Aspergers" to "Bipolar disorder" to "Schizophrenia" are very rough categorizations of thousands of different "phenotypes" (where a phenotype is the end-result of the interaction between genes and environment) that are themselves dynamic over the lifetime of the brain. (Even after adolescence, we see major changes in schizophrenic symptoms between 20 and 50.)

Over the last 3 years we've seen that many different combinations of diverse gene variants, combinations, "malfunctions" and prenatal genetic express modification can produce superficially similar clinical presentations that we squeeze into the garbage bins of "mental retardation", schizophrenia, and "autism spectrum disorder". Most surprisingly, many brains with extraordinary genetic disorders appear normal.

This classification problem isn't simply an annoyance for researchers and industrial ontologists. It has important legal, educational, financial and, yes, clinical implications. The legal, educational and financial implications are large but outside the scope of this post. Suffice to say there is a reason that the diagnosis of "autism" has exploded while the diagnosis of "mental retardation/DCD" has shrunk (clinically speaking both diagnoses are about equally useless).

The clinical implications are what matter to most of us. Autism is a fine diagnosis for getting hugely beneficial school and family services, but if it leads to pure therapeutic choices or misguided interventions then it's harmful. If we lump too many conditions into one bucket, we risk choosing the wrong interventions because they don't match the bucket.

I'm hopeful that over the next decade we'll see a revolution in thinking about neuropsychiatric disorders, and the evolution and diversity of mind. We'll become more empirical about what works and what doesn't, and recognize that the brain at 8, 14, 17, 20, 30 and 40 may be very different. We'll always need classifications, but they may be more akin to "Ritalin responsive" than to "ADHD".

Progress has been slow, but it's coming.

Brain scans for autism diagnosis - a lesson in press interpretation

2010-08-21T18:27:00.003-05:00

There will probably be some discussion about a diagnostic test for autism that sounds very accurate ...

[citation needed] - trouble with biomarkers and press releases

... The latest issue of the Journal of Neuroscience contains an interesting article by Ecker et al in which the authors attempted to classify people with autism spectrum disorder (ASD) and health controls based on their brain anatomy, and report achieving “a sensitivity and specificity of up to 90% and 80%, respectively...

It's being marketed as a screening test for autism.

Not.

In a technical but very well written post Tal Yarkoni adds to a takedown by Carl Henegan writing for the Guardian (he's Director of the Center for Evidence Based Medicine at Oxford). Briefly, it's interesting science, but the spin is a load of hooey.

Yarkoni and Henegan walk through the basic statistics of pre-test and post-test probability. I say "basic" because the math is high school, but there's nothing simple about the underlying concepts. Most physicians learn them for an epi exam, and forget them within a week. The true summary of the research is "The method relies on structural (MRI) brain scans and has an accuracy rate approaching that of conventional clinical diagnosis."

So, no, it won't be useful for screening any time soon. On the other hand, it might be a big help in understanding many brain disorders, and even in redefining the classification of developmental disorders of the brain.

iPad, iPod Touch and iPhone in autism

2010-08-13T12:05:00.001-05:00

When the iPad was first unveiled last January, one excited blogger wrote ...

Gordon's Notes: Computing for the rest of us: The iPad and the ChromeBook

... Think about your family. If it's big enough, your extended family will have at least one person who's, you know, poor. They may have cognitive or psychiatric disabilities. Or you may have a family member who, like most of American, can't keep a modern OS running without an on call geek. These people are cut off...

By 2011 the combination of a $400 iPad (and iTouch for less) and $15/month VOIP access will start to replace a number of devices that are costly to own and acquire, while providing basic net services at a rate that other family members can subsidize. Not to mention something pretty, which, speaking as someone who grew up poor, ain't a bad thing.

Steve Jobs - friend of the poor and the outcast. I wouldn't have guessed (ok, so I did predict this a year ago)..

Since then I've noted how well an iPad can work in practice for special needs persons (most elderly people are special needs, but don't tell them that) and I've configured an iPad-mini (aka an iPhone) for an adolescent with autism, ADHD, anxiety and low IQ.

Now we're reading slightly breathless reports of magical interactions of autistic persons with the iPad environment. I suspect there's some hype and wishful thinking going on, but I also believe there's some reality. These platforms are bringing communication and support technologies to populations that were previously unserviced. They are also making it possible for neurotypical non-geeks to deploy and maintain these tools at a price most families can afford.

The current iPad generation still require a desktop computer (relatively modern PC or a Mac). That's a serious roadblock to widespread deployment. There's no technical reason for this, but there may be business reasons. Apple may be unwilling to wipe out their legacy devices sales just yet. I think there's a 70% chance, however, that iPad 2 will not require a desktop device.

If you have the money and the geekiness, there's no real issue with buying and using an iPad 1.0 with your special needs person of any age (do read my writeup on the iPhone for special needs adolescents though). For most people, however, the iPad 2 or iPad 3 will be more interesting. You want to watch for a device that doesn't require a legacy desktop machine. (In our new world, Windows 7, for example, is legacy.)

Adolescent computing - the iPhone and iOS solution

2010-08-09T22:08:00.008-05:00

I've written over 30 posts about computer use and the low IQ special needs child. Now I'm dealing with computer use and the low IQ ADHD/Explosive special needs adolescent. This has some special concerns.

One is vulnerability. Most special needs adolescents are vulnerable netizens, susceptible to abuse, fraud, and manipulation. This is also true, incidentally, of many neurotypical adults and most elderly adults.

Another issue is judgment and self-control. This is an issue for any adolescent (was for me, anyway), but for the "explosive child" external restrictions are particularly important. Unfortunately recent changes in net technology (https, multiple data streams, etc) have broken a lot of parental control software. OS X parental controls, in particular, are utterly broken.

Even as one computing platform wanes, however, another waxes. The iOS (iPhone, iPad, iPad Touch) platform is a better match to the needs of many special needs children and adolescents. You can read about one iPhone setup through this post and related links.

The first steps are to active iOS "restrictions", including disabling Safari, YouTube and App installation. The next steps are to add apps that further the parental agenda, while engaging your special needs child. These are some of the apps we use (note despite his disabilities my son has a knack for software, not all persons of similar IQ will use the same apps):

Calendaring: His iPhone Calendar app shows our family calendar, school calendar, and his calendar as well as birthdays and holidays. He is very anxious when he doesn't know his schedule. The calendar anchors him. He can edit it, he can see what's coming up. All calendars synchronize to Google Calendar feeds. (See setup link, above).
Contacts: I edit them for him on our Google App domain. They help him remember people. I will show him how to add pictures to them.
Notes: He likes to make notes in the basic app. I will introduce Dragon Dictate soon to make note taking even easier.
iPod: His music of course, but also all loaded with ultra-high quality educational documentaries such as BBC's 2001 documentary "The Blue Planet" ($6.40 for 8 hours). When he's dying of boredom he can now watch TV even without a data connection. Some TV, that is. (Cue evil parental laughter.)
Camera: He loves to take pictures. I do need to monitor this. Not all his pictures are equally appropriate.
Maps: Learning his environment.
Google Earth: obviously
Weather, Clock (timer is valuable), Light, Calculator, Voice Memos -- all frequently used.
NYTimes - he reads the sports (follows the Mets).
Public Radio - so far he hasn't used it.
SkyVoyager and Star Walk: wishful thinking. He won't use these without some thought from me.
Games -- all serving some educational end - Checkers, tChess Lite, UNO, Solitaire, Virtuoso (piano), Matches (memory), MemoryMtrx (short term memory), Mental Maths and Math Drills.
Wolfram Alpha and Wikipanion: Homework aid without Google search.
MobileMe iPhone location: we know where his phone is, anyway.

In future posts I'll update and revise the list of helpful apps.

Update 8/10: I received a comment praising the use of a browser product, "mobicip" that claims to substitute for Safari on the iPhone.

Unfortunately there are two reasons to be concerned about this product.

The first is that comment was fraudulently submitted. It purported to be from a user, but "DrJim" was a link to the vendor site. The comment appeared to be machine generated. These techniques violate Google's terms of service, and they are a good marker for a fraudulent enterprise.

The second reason is that mobicip's pricing is deceptive. In addition to the product purchase you must sign up for an annual subscription to get the "whitelist" functionality you truly need.

A NYT times bits post has the best available information on this topic from a source I trust. In addition to mobicip they mention:

iWonder Surf for $15: includes whitelist abilities
Safe Eyes Mobile for $20: they also make desktop apps

If I had to choose one I'd look first at iWonder Surf.

Update: In the space of a week this $@! kid of mine has found two loopholes in the security I set up. He discovered that Google Earth has a wikipedia layer, and that clicking on those links triggers an embedded browser than runs when Safari is disabled. He eventually found ways to navigate to places he's not allowed to go. Then he found that a suite of utilities included, for no good reason, the ability to run iGoogle within the app.

Sometimes I wonder about quite low IQ test results.

Thus far he's been so delighted in his discoveries that he shares them with me. I reward him with for the invention, but then delete the app. (Good-bye Google Earth.)

Update 8/28/10: Wikipanion bit the dust. He found some interesting topic pages and pictures. Too bad there's no World Book app. A surprisingly large number of apps have embedded WebKit browsers that are not disabled when Safari is disabled. Apple needs to provide parental controls for disabling WebKit use. I wish Apple would hire me to run their parental controls effort.

Update 9/20/10: #$#$%! Public Radio.app has a $#$@ embedded web browser. Forget the thesis of this post, Apple's iPhone parental controls are as broken as can be. The good news is my son delights in showing them to me. When you have a sub 5th percentile measured IQ, and read 3 grade levels behind, it's a real confidence builder to show your Dad you've outfoxed his security.

Update 10/31/10: Today he was caught again. This time he'd learned to use the New York Times.app search function, then to click on a hyperlink, then to escape to full web search. I've stripped every non-Apple app from the phone. This really is a serious problem.

Cognitive evaluation and motivation - trickier than it looks

2010-08-08T23:46:00.000-05:00

One of my sons has substantial measured cognitive disabilities including base IQ and a range of social functions. By most recent evaluations he's borderline "mentally retarded". (A nasty phrase that's enshrined by legal statutes. Of course there's no true binary state, this is all continua.)

Which is why our titanic struggles over his misuse of internet resources are puzzling. This ought to be the mismatch of the decade. In every measure of knowledge and cognitive measurement there should be no contest between him and me.

And yet it is a struggle. Mostly I win, but he wins some too. He's proven OS X Parental Controls, for example, are utterly broken. (I have more to write about iPhone for special needs adolescence. There's more promise there, starting with disabling Safari and YouTube.)

Yes, he has a knack for software. It's not savant level, but he might be 60% for age -- that's far beyond his other cognitive skills. It's not only that however. He can be very inventive in solving the problems I create for him.

It has something, I think, to do with his alien motivations. He's not particularly motivated by neurotypical concerns like parental approval or even peer approval. This means he barely exerts himself in measurement settings where most people would at least make a go of it. Where he is motivated, therefore, he performs significantly better than his testing would suggest possible.

Of course in most domains he can't perform in the neurotypical range no matter his motivation, but the reality of his peculiar (and highly problematic) motivational structure does mean most testing will underestimate his maximal abilities (though they do predict his performance in the settings we care about).

I suspect he is not unique.

Treating autistic symptoms with oxytocin

2010-08-01T00:26:00.001-05:00

Oxytocin plays some roles in human social behavior and empathy. Back in 2005 I wrote about the possibility of using this in autism treatment.

Alas, five years later the studies are still pretty modest -- Promoting social behavior with oxytocin in high-fu... [Proc Natl Acad Sci U S A. 2010]

Since the drug is off-patent, there may not be enough money to motivate research and production. Frustrating. We need better treatments ...

Minnesota Online Special Needs Directory

2010-07-27T09:27:00.002-05:00

I just found this online directory: Minnesota Online Special Needs Directory: Twin Cities Metro Area. It's referenced by the Wrightslaw Yellow Pages for Kids with Disabilities (MN).

It's published by Jenzi Silverman at the UMN Dept of Educational Psychology. It's very plain -- there's not even notation of last revised date. I don't find the organization terribly useful, it's crying out for an embedded Google search box, but it's the only place I found an (obsolete!) link to the interesting Eagan ProAct agency that works on employment skill development.

Clearly I need to create a custom google search for MN special needs resources and show Jenzi how to embed it in her directory page. More on that soon (I hope).

iPad for special needs

2010-07-26T16:16:00.001-05:00

Gordon's Tech: Grandma's iPad - A user guide and review was written for low vision elderly, but there's a substantial intersection between the needs of the elderly and those of special needs kids and adults.

Managing screen time limits - a new tactic has some success

2010-06-27T21:53:00.000-05:00

We've had good success with trading time limited computer access for behavioral goals. We've had a problem however when the time is up. It's very hard to stop, especially during a game.

I'm sympathetic, but with this sort of thing our son does better with firm boundaries. On the other hand, this has led to some difficult battles. As the #1 son moves further into adolescence, it's harder for Mom to enforce rules.

Still, this is a battle worth fighting. Tracking time, recognizing a deadline, then overriding the desire to continue are great executive function exercises. It's push-ups for his frontal lobe.

Recently I've had some success with flipping the problem around. As well as punishing him for going past his time limits, I'm rewarding him for finishing early. He gets to rollover unused minutes, and he gets three stickers (8 stickers = 10 minutes computer time) if he finishes before the timer completes*.

This has worked better than expected. We remind him prior to logging him in, and we remind him about about 4 minutes before the end. He's getting good at ending 1 minute early (or a bit less, since he knows we round up. There are times I wonder about how accurate his IQ testing is.)

Eventually, if he continues to succeed, we'll dial back on the reward but he'll always be allowed to rollover unused time.

It's surprisingly hard for us to come up with these judo moves; it's easy to get stuck in a pattern of confrontation. When they work though, it's satisfying.

* We use a visual timer that has become popular in the special needs population.

Adolescence - continued ...

2010-06-27T17:26:00.001-05:00

It would have been nice if our pediatric endocrinologist had been right and we had been wrong. Nice, but unlikely.

So our eldest guy with disabilities both a teen and physiologically adolescent. We've moved into phase II of the "great game" of his life.

It is a good time to review the objectives we've held since studying the most important book every written.

Avoid serious irreversible harm to others.
Avoid serious irreversible harm to self.
Avoid America's well funded special needs residential care program
Maximize the cognitive skills that will be most useful to him in work and in life. Reading and social intelligence of course, but also leverage his relative gift for technology use.
Maximize his physical health and personal happiness.
Find the best possible adult residential arrangement with the most feasible independent living option.
Find him employment he enjoys.
Set up a support system that can outlive us.

Adolescence and beyond

2010-05-26T22:08:00.002-05:00

The years go by.

One SNC (special needs child) is doing very well. So well his teachers want to end his services and his IEP. We think they're premature, so we're negotiating for measurable milestones. If he passes those then we're ready to try the next grade without services.

Teachers and administrators have as much trouble with measurable milestones as, for example, software developers and physicians. Measurement is painful

Another SNC is also doing well in many ways, though we do not expect him to live without services. His written expression has improved greatly thanks to excellent teachers, and perhaps due to his fairly regular texting. He's done so well at texting that we've gone to an unlimited texting family plan. I hate the $360/year cost, but it's cheaper and more effective than paying for a writing tutor or for OT work. Too bad I can't pay for the family texting out of my health flex plan.

We're working through typical adolescent issues. We've had some luck with language modulation by setting up a sticker reward system for a day without any banned words. His siblings quality 100% of the time, my son hates it when they get a column of stickers (computer time or money) and he doesn't. Over the past two months this program has, to date, largely eliminated the paint blistering language issues we had.

I continue to be bemused and surprised by his computer skills. My wife is in the 98th percentile on her medical board exams (she used to be 99th but now practices very part time), but my low IQ son is much more skilled than she on our computers. He has an intuitive grasp of how software works, and delights in finding gaps in Apple's not-entirely-robust parental controls system.

Similarly he shifted fairly easily from a not-too-friendly Nokia phone to a user-hostile Windows Mobile phone. This is a peculiar facility we can use. (I'm inclined to buy him an iPhone. The two drawbacks are that for his demographic iPhones are both uncool (geezer phones) and very quickly stolen (for sale to geezers, presumably).

Our thoughts now look seven years ahead to supported living arrangements and to the possibility of residential occupational training programs. A colleague's son is entering one of the latter programs and I'm researching whether anyone is developing similar programs in Minnesota.

Understanding an unusual mind

2010-05-03T22:04:00.002-05:00

One of the pop-psychology characterizations of autism is that it's a "model of mind" problem. Persons with autism, it is said, cannot "model" the minds of others. This is sometimes associated with claims that autistic brains have "mirror neuron" defects, and that "mirror neurons" are the physiological foundation for "model of mind" functions.

I call this "pop psychology" because it's very hard to test this class of theory. We simply don't know enough about how the brain works. My own personal speculation is that brain assembly is always problematic, and in the micro-evolutionary process of adapting brain infrastructure to "reality" various subsystems are repurposed (sacrificed) -- including those involved in modeling other brains.

Whatever the eventual utility of the "model of mind" theory, I find it useful to create my own model of my son's mind (actually not just one son's mind, but I'm simplifying here). It's a very different mind from my own, so I have to be thoughtful about how I model it. I can't use my own mind as a template for how his works. He has very different ways of "making decisions"; he has different values, different needs.

Creating a model of his mind is an iterative process. I make assumptions, test to failure, and revise. He changes too, and I have to revise my thinking. In this I'm guided by my three top special needs references:

3 Steps to Yes: The Gentle Art of Getting Your way (Gene Bedell) - particularly important for the adolescent phase of life
Greene - The Explosive Child
Training exotic animals - a short NYT article - see also Kazdin
Be the Best You can Be: Reading about autism and ADHD - our personal favorites

My current model of his mind might be useful to those who need to create their own models of different minds. Here are the key aspects and some working implications of them:

He needs to know where he is in time. If he doesn't know, he becomes very anxious. He needs to know the detailed schedule for the day, and he needs to know the upcoming week to months schedule in less detail. It has been helpful to put paper calendars up with the high level timeline, and to give him a Google Calendar account that emails him daily agendas and sends appointment reminders to his phone.
He needs to know where he is in space. He becomes agitated in environments where he is not confident of his navigational ability (example: forest trails). GPS is our friend, since with it I can demonstrate good navigational ability. We work with maps as well. In new areas, I try to do extend familiar ground rather than introduce entirely new routes.
He is not strongly motivated by the feelings or opinions of others. He feels some need to please selected persons, but this is a small fraction of the motivation felt by neurotypical children. This is a significant challenge.
He doesn't like to see his siblings, or even strangers, upset. He can be quite sympathetic. This seems contradictory to #3, but if the upsetting force is him he's more likely to be agitated than sympathetic. Similarly his family is extremely important to him, but that doesn't necessarily change his behaviors.
He is motivated by near term rewards where the rewards are experiences he likes (treats, computer time, his movie pick, etc).
He is not motivated by money. Money tends to bother him, he feels compelled to spend it immediately.
He very often feels aggrieved and badly done by in comparison to his siblings. He doesn't easily translate relatively privilege limitations or time outs to his actions. This seems partly a cause and effect problem.
He is currently unable to understand the concepts of "trust" and "reputation". He does not understand that people will predict his likely future actions based on his past actions. This is a significant challenge but I think he can learn this. It is an educational focus.

The more I can model his mind, the better I can discover levers that can change his behavior. So I keep testing my model, and refining it.

Suspect with little evidence: The action of psych meds on injured brains is unpredictable

2010-04-18T14:19:00.000-05:00

Another in a series of things I suspect but cannot prove ...

I suspect that the actions of psychiatric meds on injured brains cannot be predicted.

If this were true, it would not be surprising. It's hard to predict how psych meds affect even intact brains. In the injured brains of autism, mental retardation, and (presumably) schizophrenia we expect to find unusual neurotransmitter distributions, injured connections with recovery bypass routes, and areas of atypically high and low activity corresponding to injury and compensation.

If this were true, it would not mean we should avoid these meds. It would mean that we should look for unexpected side-effects, and perhaps be cautious about how we interpret response and failure. It would also mean that medications might be unexpectedly effective in atypical contexts.

Anyone know of any research on this? I doubt any research exists, there's unlikely to be funding for it.

iPad for accessibility – and special needs?

2010-04-13T08:35:00.001-05:00

Josh de Lioncourt has written a review of iPad use for visually impaired persons. He’s pretty positive, though reading between the lines I’m guessing version iPadOS 4.1 will be much better (4.0 is due out this fall, I expect 4.1 @ Feb). It does seem like Apple turned a corner with the 3GS iPhone; previously they’d taken a big step backwards with the Classic to OS X transition.

An essential feature for visually impaired persons is VoiceOver, Apple’s robust screen reader. These same technologies are also very helpful for people who struggle to read. Voice commands help those who struggle to write, and predictive text entry helps students who have trouble typing.

The same features that make the iPad accessible to a large number of Americans who don’t use computers well also make it interesting to the special needs community. It is relatively simple to use, very easy to maintain, and much more resistant to virus infection than traditional computing devices.

The next generation iPad will almost certainly support video conferencing (that’s far more likely than adding a camera). There are many uses of that kind of technology in providing support to special needs teens and adults.

It’s a new world indeed.

Fortune

2010-04-11T14:42:00.004-05:00

My daughter leaves Zen Shorts out each night for her dolls to read.

One of the parables retold is about fortune. This moment's fortune may be the future's misfortune; this moment's misfortune may be tomorrow's gift.

Yesterday we came within an inch of life shattering tragedy. There was an unlucky accident born of special needs adolescence.

Unlucky?

The cost was small compared to what might have been. Lives have changed, judgments have been revised. Yesterday's future is gone, today's future is new.

Lucky?

You never know.

Persuasion, adolescence, and the joys of prison life

2010-04-08T07:48:00.010-05:00

Low IQ special needs adolescence does not come as a "thief in the night". It comes as a ton of bricks.

Behavioral management, which was never terribly effective, has become even less effective. We may still have a "paradoxical permission" effect, whereby when we give permission for an annoying behavior it becomes less attractive. I'm not sure we have even that however.

Medications are still available, but of course side-effects may be less tolerated.

Which is why I'm turning, with a measure of desperation, to my favorite sales book: Three Steps to Yes: The Gentle Art of Getting Your Way by Gene Bidell. I hope I can use some of Bidell's techniques to change my son's choices.

Bidell emphasizes understanding your Prospect's recognized and unrecognized needs and aversions, then figuring ways to meet them to get the sale. The Prospect "needs to win", for example, so find a way they can win and you can lose -- while still getting the Sale.

Understanding my son's world is a real challenge. He combines the limited knowledge of an early teen with a limited capability to understand and assimilate new knowledge.

I think, for example, that I erred by describing prison as the outcome of particularly poor choices. In my son's mind, I now realize, prison means no school, association with the police and K9 dogs he loves, comforting concrete instead of disturbing nature, agreeable routines, few challenges, plain meals, lots of television, regular exercise, no frightening choices, no concerns about employment, and congenial like minded peers.

In his mind, prison is not a bad thing, it's a bit heavenly. The worst bit is that in some ways he's quite right. He might actually find a well run low security prison more congenial than the alternatives.

So I need to persuade him that there are better options than prison (even if I'm not entirely sure there are - but that's a different story). Juvenile detention, for example, does include math class. It doesn't provide much police contact, and there are no K9 dogs. Most of all, there are no girls and his companions may not be very friendly.

At the same time I need to come up with a better future alternative for him to work towards - and I need to come up with it very quickly.

Any ideas?

Update: In our community the local police are happy to enter a special needs person into their database with a special "tag" including disability and contact information.

Update 6/26/2010: UK study on low IQ prison population.

A new behavioral intervention: adding calendaring

2010-04-06T21:42:00.001-05:00

It's easy to persuade someone who can reason about past and future, and who can connect actions and consequences.

It's much harder to influence someone when reward or consequences must instantly follow action, where the past is forgotten and the future is inconceivable.

So we would like to make the future more real, more tangible. Something that he can interact with. We need to do it in a way that leverages his skills.

How do we do that?

We know that despite a quite low IQ he has a relative talent for devices and computers. They are natural to him, more comfortable and familiar than forest or water or rock. He struggles with many things, but not with software. Plan iMac has been successful. He's done well with his mobile phone, and texting seems to have advanced his writing skills.

So I've added a Google Calendar to his Gmail account - both on our family (free) Google Apps domain. He can view his parent's free/busy time and subscribe to other calendars of interest to him. I've populated his calendar with school events, and "invited" him from our calendars for events of interest. By necessity we have to plan a long way out, so he can see major events coming from many months away. He's awaiting the arrival of a Wii game -- I've put the estimated arrival time on his calendar.

My goal is that he interact with time through the calendar, that he begin to have a sense of future and past. I expect he will add his own events. Calendar items send SMS reminders to his phone (default 30 minute warning).

If he can develop a sense of time, then maybe we can return to teaching about deferred rewards, and then have more ways to change his behavior.

Update 5/26/10: We ran into a calendaring problem. We can't give my son unlimited Google access since his Google Image searches are not necessarily family friendly. We can't, however, using OS X parental controls, block Google Image search without also blocking calendar access. So this plan is on hold for the moment.

Not recommended: special needs spelunking

2010-04-06T19:20:00.003-05:00

This actually worked, but I wouldn't try it the same way again.

We took two "spectrum" kids on the regular guided tour of Wind Cave National Park.

One of them was on the verge of bolting for the half the 60 minute tour, then he settled down. The other was tearful, anxious and had his ears covered and eyes largely closed for about 50 minutes, though after 30 minutes he was doing better. By the last 10 minutes he was almost ready to start.

It's very hard to exit one of these tours. You need a guided escort to take the elevator hundreds of feet to the surface. Yes, it was a bit much for our guys. They need a more gradual introduction. We should have started with the small-time gaudy tourist-trap type caves that are easy to enter and exit. Then we could have worked up the to the real thing.

It can be done though. Not saying it should be done ... this way.

A prosthetic conscience for special needs persons

2010-04-05T12:24:00.001-05:00

Some special needs teens and adults may wish to do well, but have a great deal of difficulty modeling the impact of their actions. Impulse disorders, limited abilities to abstract, and autism-associated disabilities may all make a prosthetic conscience useful ...

Gordon's Notes: A conscience for robots - and for humans too

... Some humans too would benefit from a prosthetic conscience. It might allow persons with disorders of conscience to function more effectively in the modern world. Our prisons are full of low IQ individuals with a limited capacity to model the impacts of their actions on other persons. A prosthetic conscience might allow them to avoid prison, or to have great success after prison life...

Adventures in special needs – A Nordic ski resort

2010-02-18T08:41:00.000-06:00

At one point in my life if I felt I needed a challenge I’d ride my bike a few thousand miles, or explore a foreign land.

Now I can dwarf those experiences with a simple four day outing to a Nordic ski resort.

I’m still recovering from this challenge. It was successful, but it did push the envelope.

We started a few months ago with one neurotypical child and two on the “autism spectrum” (a somewhat meaningless concept, but we don’t yet have a better classification). One child had done some snowboarding with limited success and had refused any skiing of any sort. Another had done some downhill skiing and decided, after a single face plant, that downhill skiing was insane. A third had very nervously descended a bunny hill.

We ended with all three navigating intermediate cross country ski trails in the wilderness (really) of northern Wisconsin.

The unique challenges here included:

Three children, two parents. This stuff isn’t easy even for neurotypical children and it was very rare to have all three in a reasonably good mood at the same time.
Weather. These children are used to winter, but an autistic meltdown can take a long time to resolve. Sitting around at 10F for an hour can be a problem, and they don’t necessarily respond to cold in a rational way.
Clothing. See weather. Spectrum kids and adults can be resistant to logical dressing.
Gear. Actually, this was easy. Cross country skiing fear is much more comfortable than downhill or even snowboarding gear.
Unfamiliar environment, atypical stimuli: Northern scrub forest, harsh winds, knowledge that there really are wolves and cougars in the woods (even if they usually stay out of sight) – all troublesome. One child has a very strong need to always know exactly where he is in relation to the home base and to all family members – the first time on a trail was extremely scary. (The second time was easy however – his location memory is exceptional).
Different schedules: One child takes hours to come online and peaks in the afternoon. Another rockets at dawn and is done by noon.

The full story of how we made the transition for all three over about two months would take a book to tell. It required genuinely Machiavellian manipulation of sibling relationships and a wide variety of motivators.

There are some quick lessons, however, that one might apply to a variety of similar special needs adventures.

Food: As a result of the climate, exertion, and anxiety the children needed to eat five times a day. If they were short on food they all melted down. We needed to keep them fueled with solid, high fat, high protein meals.
Everyone melted down sometime, including the neurotypical child. Interestingly they rarely melted down all at once, perhaps because there was a strong sense of group solidarity. Each child felt their parents had gone insane and they needed to look out for one another.
Choose a friendly resort in decline with a very good pool. The downsides of the resort people having limited knowledge of what worked and what didn’t was outweighed by the warm water swimming pool. The need to serve to the smoking, drinking, and spending snowmobiling market meant our kids oddities went unnoticed.
Our mobile phones were useless, but we had modern digital “walkie-talkies”. These things are cheap and absolutely amazing. REI has very good ones.
It would have been better to have had a third person along, but it was doable.
You need to be fully on your game. Get lots of sleep. Plan carefully and be ready to abandon every plan. Have contingencies for your contingency plans, and be ready to abandon those. Know when to retreat and when to advance.
Find a local expert and review all the trails in depth. In our case one parent woke early to scout out trails in advance and plan routes – that worked well. Get the best possible maps. Have a compass.
Carry a big pack to hold clothes, jackets, reserve materials, etc.
Be ready to stop a passer by and send them for help. We never had to do this, but you have to be psychologically ready to bail.
Establish a routine very early. Our was: TV and breakfast while Dad scouted routes. Swim. Eat again. Skiing. Eat again. Game room/rest/computer use. Eat. Ski/Other. Eat. Swim. Video.
Bring chocolate on the trail.
Lower the room temperature before dressing. Open a window and discretely turn off the heat. This is a big help.
Overdress. They need to be warm at the start. Clothes can be removed and placed in the backpack.
The kids snow pants were too heavy. We’d have done better with lighter wind pants over the nylon loose stretchy pants our boys favor. Invest in clothing.

There’s much more, but those are the ones I can remember. The most disabled child who we thought least likely to succeed turned out to be a wizard – he skied circles around us wearing only a long sleeve shirt when the wind chill was probably 10F. Everyone succeeded, all our goals were met, and the parents will eventually recover.

Behavior motivation: text message controls

2010-02-18T08:34:00.001-06:00

One of my charges combines substantial cognitive and psychological disabilities with a profound insensitivity to common motivators.

Yes, this is challenging.

On the one hand, he has substantial limits. In a modern post-industrial society, he is profoundly disabled. In this he has a lot of company – in our emerging world many neurotypical males with an IQ below 120 have unknowingly joining the world of the effectively disabled.

On the other hand, he often performs far below his maximal abilities. Sometimes that’s because his peak performance is very dependent on environmental factors such as medications, time of day, sleep reserves and satiety. Quite often, though, it’s because he doesn’t respond well to any behavioral motivators, including extinction, operant methods/positive reinforcers, negative reinforcers (time out, privilege loss) and peer groups. That’s not to say they don’t work at all – it’s just that there’s a great disconnect between behavioral tool and response. Instead of power steering, you turn the car by dragging a foot.

When he is motivated, his learning and performance increase dramatically – sometimes into the normal range or even beyond. I remember one hockey practice where fast skaters got to stop sooner than slow skaters. He vaulted from the bottom 20% to the top 10% – without seeming to work all that hard. He then returned to his usual easy pace. When he’d misplaced his prized mobile phone the child who can’t remember anything recited a Temple Grandin-style video-recall linear recitation of everything he’d done with the phone – from the morning to the last moment he touched it.

So we’re always looking for new motivational tools to close the motivation gap and bring his behaviors closer to his maximal abilities. Anything he shows a strong interest in is fodder for behavioral motivation.

The most recent motivator comes from a combination of his technology love and the AT&T parental controls on his mobile phone account. He has grown very fond of texting.

One the one hand, we really want to encourage his texting. It is by far his most common form of written expression. He texts a teenage neighbor, who is kind enough to reply. He texts his school mates. He texts me.

On the other hand, anything he likes that much is a lever.

The way we currently use the texting leaver is we pay $15 a month (vastly cheaper than far less effective reading/writing tutoring) for 1,500 messages. This is well below his current use of about 500 texts a month. I then use the AT&T parental controls ($5/month) to set a cap. If he meets various various behavioral goals, such as working on math homework, he never sees the cap. If he’s not motivated, he runs out of text messages.

It’s just one more lever. We have to be careful not to overuse it, but every one we add helps move us forward.

See also:

(Honestly – these are good. On putting this list together I realize I’d forgotten some effective approaches I’ve used in the past.)

The sad story of the autism vaccination scam

2010-02-04T22:16:00.002-06:00

Rahul Parikh, on the occasion of Lancet withdrawing the fraudulent Wakefield Autism/immunization paper, reflects on its legacy.

It's a sad story. Wakefield, who ought to be in prison, prospers. Parents agonize over immunization. Misguided publicity hounds perpetuate fraud. Children suffer from preventable illnesses. Credulous advocacy groups waste time and money chasing a lie.

There's no justice. It will take another decade to get this fraud behind us.

Residential occupational training for special needs adults - Eastern New Mexico Special Services

2010-02-02T17:18:00.000-06:00

Eastern New Mexico university offers a residential training program for adults with special needs. They are part of the western educational region, so it’s local tuition for neighboring states.

Special Services - Occupational Training Program

The Special Services Department provides services to students with disabilities. We maximize educational and career opportunities, assist disabled students with integration into the university community, and accommodate those students with services needed to allow full participation in all programs. Our certificate program is designed for students who, with appropriate training, are able to obtain positions in competitive employment. We currently have a three semester program, with a second year being developed. This second year will focus on independent living skills and employment.

Entrance Requirements:

A vocational evaluation less than 2 years old. (Either call our office to schedule, or obtain one privately).
Complete documentation and full disclosure of medical/developmental disabilities.
18 years of age or older.
Ability to self-medicate with no assistance.
Independently awaken to alarm/attend classes regularly and on time.
Maintain appropriate hygiene/laundry/dorm room.
Demonstrate effective communication skills and appropriate behavior.
Meet minimum entrance requirements for the selected study discipline.
We have a zero tolerance for any drug/alcohol use and students will adhere to the Standards of Behavior as outlined in the campus handbook.

Certificate of Occupational Training Courses:

Vocational classes and practicum’s/Job seeking skills/resumes
Independent Living I, II, III and labs. Advanced IL for second yr.
Recognizing Conflict/Conflict Management
Physical Education (adapted)
CPR/First Aid
Driver’s Education (optional) with lab
The College Experience

The Special Services Occupational Training Program leads the student to a Certificate of Occupational Training (COT). There are several career programs available (see course catalog). Vocational training emphasizes hands-on instruction, including 12-20 hours per week of on-campus classroom, lab, and off-campus practicum experiences. The technical skills taught in each career field prepares the student for competitive employment in that discipline.

Occupational Training Areas:

Auto Mechanics
Certified Child Care Attendant
Floral Design
Food Services
Certified Nursing Assistant/Home Health
Office Skills
Refrigeration and Air Conditioning Maintenance
Sanitation, Building Maintenance, and Grounds Keeping
Welding
Veterinary Assistant

Special Topics:

Animal Healthcare
Stocking and Merchandising
Dorm Life & Independent Living

Students are provided opportunities to build positive social skills and demonstrate appropriate social behaviors by living at Sierra Vista Village. Although supports are in place to assist our students with the social challenges of living on-campus, all students are considered adults and are expected to adhere to university policy and standards of behavior. Our department has staff available between 7:00 a.m. – 10:00 p.m. Monday through Friday to assist students in their transition to dorm life, learning domestic skills, and making good decisions now that they are living independently.

Students and parents must remember: our educational program is geared toward students with disabilities; however, all students are adults, and must be able to live in the dorms and attend all classes and work sites with no assistant. Each student is expected to take responsibility for their educational and personal success or failure, and demonstrate maturity and behaviors appropriate for a college campus.

Although second year students are allowed to live in the apartments on campus; first year students live in the dorms.

Independent Living classes and labs are required courses for the COT program. In addition to labs, students choose a one hour elective from the following as part of the lab requirements:

Art
Sign Language
Theatre
Support from the Special Services Department:

Academic and tutoring support is provided as needed.

Computer Labs are open for students to use
Limited health concerns are seen by our Certified Family Nurse Practitioner.
Campus Security 24/7
Social Events

Resident activities are held, such as movies, dances, B-B-Q’s, and day trips. We also have Special Olympics and the snow skiing club.

Residence Hall

Our students gain independence as they display responsibility. Staff supervision is active until curfew and, as with any college student; our student’s are expected to adhere to dormitory rules and regulations:

Curfew: 10:00 p.m. M-TR - 12:00 a.m. FR-SAT
Sign in/out log
Weekend check out
Weekly room inspections
No opposite sex visitation in rooms
No private transportation for the first semester
Graduates

Our career training allows students to learn marketable vocational skills, as well as practical life and independent living skills. We pride ourselves on the (avg.) 75% employment placement of graduates. Graduates leave our campus with verification of training (COT), certifications, valuable life experiences, and positive personal growth.

Verification of Training

COT from Eastern New Mexico – Roswell, an accredited university.
Checklist showing technical skills mastered in the chosen discipline.

The web site has additional materials …

Special Services - Occupational Training Commonly Asked Questions – skills taught, employment goals
Special Services – Staff

Google suggests an article marketing a vocational assessment program for additional background …

Marla Wittkopf is the vocational evaluator with the Special Services Department at Eastern New Mexico University-Roswell (ENMU-R) in the state's southeastern area. Marla has been with ENMU-R for seven years and is a tenured faculty member at the institution. The Special Services Department is part of the Developmental Studies Division, and ENMU-R is a branch of ENMU-Portales. This past academic year, Marla tested 115 students, most of whom subsequently enrolled in the Special Services Occupational Training Program.

The mission of Special Services is to provide occupational and social skills training for students with disabilities who come from across the United States. Although the program can accommodate students without disabilities, the great majority of them have various disabilities. Many have learning disabilities, and throughout their lives they've been constantly told about all the things they can't do. "It's neat to see their reactions when we help them realize all the things they can do," said Marla.

The program offers students vocational evaluations, counseling, and training within a work setting of their choice in the Roswell community. If program graduates decide to remain in the Roswell area, Special Services staff are often instrumental in aiding them in finding employment in their chosen occupations.

The Special Services program is unique in the country in that Special Services students live in dormitories on campus, just as students without disabilities do. "They get the real college experience that way, and it also challenges them to learn important new skills," said Marla. "Their days are broken up into two parts, classroom work in the afternoons, and practicum job site training in the mornings. Living away from home in a dorm setting is a big, big change for most of them, and they take classes to help them adjust to living on their own. They take such courses as independent living, conflict resolution, and adaptive physical education."

At graduation, students are awarded certificates of completion that list all of the work skills they have mastered--at least 75% of the job's specified skills. Seventy percent of those who begin the program graduate, and about 75% of the graduates are successfully placed in jobs after they complete the program. "And often the three semester program builds their self-confidence to the point that they want to continue their formal education," said Marla. "It serves as a springboard for students who want and are able to earn their Associate's degree."…

… Many of the students enter the program with specific occupational goals in mind, and it's often the case that their goals are unrealistically low or unrealistically high. "It's not unusual for them to come in saying they want to be physicians or lawyers. Pro3000 and the work samples help them see very clearly where their abilities are compared to the occupational requirements…

… "Many of our students come in having been beaten down all their lives, people always telling them all about what they can't do. Of course they're discouraged," Marla said. "I stress to them that everybody has their own, personal ways of doing things, and we all have areas of strengths. There's no one 'right way' of doing things. We help students discover what they can do. We also provide assistive devices and adaptive procedures (accommodations) where needed. We view those as the equivalents of the reasonable accommodations employers are required to provide disabled workers under the Americans with Disabilities Act….

Special needs computing - the iPad and the ChromeBook

2010-01-29T09:26:00.001-06:00

Interesting developments for providing communications, work, life and cognitive support to persons with cognitive disabilities ...

Gordon's Notes: Computing for the rest of us: The iPad and the ChromeBook

.... Think about your family. If it's big enough, your extended family will have at least one person who's, you know, poor. They may have cognitive or psychiatric disabilities. Or you may have a family member who, like most of American, can't keep a modern OS running without an on call geek. These people are cut off. They can barely afford a mobile phone, and they won't have both a mobile phone and a landline. They will have little or no net access. They may have an MP3 player, but it's dang hard to use one without a computer.

By 2011 the combination of a $400 iPad (and iTouch for less) and $15/month VOIP access will start to replace a number of devices that are costly to own and acquire, while providing basic net services at a rate that other family members can subsidize. Not to mention something pretty, which, speaking as someone who grew up poor, ain't a bad thing...

We'll be able to deliver some interesting cognitive rehabilitiation services on this kind of platform.

Judo moves on an atypical mind: Plan iMac

2010-01-23T13:10:00.029-06:00

If you told me my 13 yo's measured IQ and reading levels 20 years ago I would not have received the news well.

Among other things, I might have assumed someone like him would be institutionalized.

In reality, things are more hopeful, interesting, and challenging. Whatever level he tests at, he seems to extract the information he is interested in from printed materials -- including newspapers. His reading interests are regrettably focal, but I can work with them.

He can barely print and his hand printed spelling is very poor. On the other hand, he's oddly good at old-style dumb-phone texting. There's something about tapping out each character that helps him slow down and process words. So I've given him texting privileges, and, each day, once school is out, I start texting him from my iPhone. I loathe the high cost of texting, but as an educational aid for my son it's extremely cheap. My superficially indulgent mobile phone experiment has been a robust success.

So how did he figure out the phone? How is he able to tweak every obscure setting despite the awkward UI? How did he learn to text? I can't explain this, any more than I can explain his peculiar game skills and non-verbal visual talents. All I can do is look for opportunities to leverage his strengths against his weaknesses. The struggle feels like a cross between dance and judo.

I've just introduced a new move. The early signs are encouraging.

First, some background. For years we've had to sharply restrict his TV access because he became agitated after watching commercial TV (he does much better movies and commercial-free DVDs).

Being TV free has disadvantages. Besides the loss of the electronic baby sitter (I'd use it if I could), I suspect he could learn from selected videos; his visual processing is far stronger than his auditory processing.

For similar reasons we've had to restrict his computer time, even though he has a relative knack for computer interaction. I have been amazed by his ability to bypass my home security measures. Recently he guessed an obscure password; I suspect he intuited it through a mixture of seeing it partly typed and then coming across it in a different setting. How can someone who tests so very badly be consistently breaking my computer security? There's something there I should be able to use.

So now I've made another Judo move. After years of restricting his computer access I've seemingly reversed course and created a "Learning" account on an iMac I've moved into an area we can supervise. This account provides him and his siblings unlimited access to homework resources, educational web sites, his email and twitter, encyclopedia, educational and scientific videos, iTunes U and the like. It does not, however, give him any access to the web sites and game software he loves to use. To get to that material he will have to hack through OpenDNS and OS X Parental Controls. A good challenge.

Today I saw him playing with Scratch, a visual programming language he learned in grade school. Interesting.

I'll report on how Plan iMac turns out.

Latest sticker chart innovation: discouraging sibling torments

2010-01-02T11:40:00.003-06:00

When one sib is verbally annoying another, the victim gets stickers for non response (self-control). This initiative is a component of our recent "politeness initiative".

On the one hand the aggressor does wish to unilaterally reward a sibling with stickers (which are exchanged at a per-column incremenet for hard cash, Amazon credits, and screen time). On the other, the sibling practices self-control.

Works well for an Asperger/explosive mix. For the moment. Of course nothing works indefinitely, so we'll rotate it in and out of the mix over time.

The end of autism

2009-12-25T13:21:00.007-06:00

No, the problems of suboptimal neurodevelopment are not going away. The concept of "autism" has lasted longer than I'd expected, but the assault continues ...

Syndromic autism: causes and pathogenetic pathways. [World J Pediatr. 2009] - PubMed result

... Genetic syndromes, defined mutations, and metabolic diseases account for less than 20% of autistic patients. Alterations of the neocortical excitatory/inhibitory balance and perturbations of interneurons' development represent the most probable pathogenetic mechanisms underlying the autistic phenotype in fragile X syndrome and tuberous sclerosis complex. Chromosomal abnormalities and potential candidate genes are strongly implicated in the disruption of neural connections, brain growth and synaptic/dendritic morphology. Metabolic and mitochondrial defects may have toxic effects on the brain cells, causing neuronal loss and altered modulation of neurotransmission systems...

Of course even if we abandon use of the term "autism" in quality clinical care and research it will remain tightly bound to service delivery. It will take decades to remove the concept from legal, reimbursement, educational and policy frameworks - and the slow, ponderous, archaic evolution of the DSM "classification" will keep it in psychiatry texts.

Autism will be preceded, I hope, with the end of "Asperger's" - at least in scientific writing. "Asperger's" will join "the planet Pluto" in the netherworld of meaningless terms. Within 10 years "autism" should also be replaced with a classification of neurodevelopmental disorders (the neuroconnectopathies?)

It's not mere pedantics. Names are powerful. Names determine how we interpret research results, how we predict outcomes, and, above all, how we decide which therapies to try first, and how we assign services and support. More precise names for the the complex mix of neurologic injury and repair we currently call "autism" will mean less time wasted on ineffective treatments, quicker use of what works, better targeted research, and more creative thinking.

See also:

TAGteach - dog training for special needs learners

2009-12-22T21:44:00.004-06:00

TAGteach is a training methodology that uses the "clicker" operant conditioning approaches best known from dog training, together with positive reinforcement strategies, to teach special needs and other learners.

A Wikipedia article on Karen Pryor provides the best overview. I hadn't realized that the clicker training started out with BF Skinner in the 1930s. My primary exposure to Skinner came in the 1970s when he was terribly unfashionable, it's funny now to realize he pioneered many approaches I currently favor. He was wrong to think that humans were fully environmentally determined (seems silly now), but right that training humans is not much different from training birds, dogs, primates and dolphins.

I'm going to start following the TagTeach blog, though I do detect a few reddish flags. There's a bit too much confidence that this method solves all problems. Experienced special needs parents know there's no perfect solution to all learning and behavior problems, and that solutions come and go (often several times!).

That caveat aside, it looks like TagTeach includes some techniques here we can add to our repertoire. Consider one example from "Denise" ...

One of the many things "Robert" is working on is writing. His writing goal is to draw a vertical line....

My plan was to tag Robert for 1) touching the marker, 2) holding the marker, 3) holding the marker in a writing position, 4) touching the tip of the marker anywhere within the opening of the stencil, 5) moving the tip of the marker within the stencil, and then (hopefully, eventually), drawing a line within the stencil...

... he tried to take a juice container from the counter so I knew I had access to something he wanted.

So: I gave Robert a sip of juice and tagged him. Then I showed him the marker which he took and threw across the room. I tagged him as soon as he touched it, ignored the throw, and gave him a sip of juice...

This scenario illustrates the use of positive reinforcement (juice for Robert, treats for a dog), stepwise teaching (almost always a good idea) with victory at each step, extinction (ignore the thrown marker) and using the click to mark success and "stop the clock".

Nice example.

Thanks BK for the referral!

See also:

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Brain changes related to intense remedial reading programs

2009-12-16T22:41:00.001-06:00

Remedial reading programs are common - but I don't think there as intensive as this paper published in Neuron ...

White Matter and Reading in Children - Health Blog - WSJ

... Researchers found that kids who were weak readers fared poorly on a common measure of white matter in a key region of the brain. But after 100 hours of intensive reading instruction, the kids showed significant improvement in white matter (and in reading). Similar children who didn’t get the intensive instruction didn’t show improvement. The study included 47 weak readers and 25 strong readers, and the kids were between ages 8 and 12...

The abstract doesn't tell us much about the reading program, and the full text article is not freely available at this time. I'd love to know what program they used.

Wealth and med choice: the antipsychotics

2009-12-13T06:59:00.014-06:00

Interesting results, annoyingly inflammatory interpretation ...

Children on Medicaid Found More Likely to Get Antipsychotics - NYTimes.com

New federally financed drug research reveals a stark disparity: children covered by Medicaid are given powerful antipsychotic medicines at a rate four times higher than children whose parents have private insurance. And the Medicaid children are more likely to receive the drugs for less severe conditions than their middle-class counterparts, the data shows.

Those findings, by a team from Rutgers and Columbia, are almost certain to add fuel to a long-running debate. Do too many children from poor families receive powerful psychiatric drugs not because they actually need them — but because it is deemed the most efficient and cost-effective way to control problems that may be handled much differently for middle-class children?...

These sorts of studies irritate me. Not because they're unimportant, but because they are relatively easy to do, they are prone to error in interpreting diagnostic data, the level of discussion is usually weak, and there's rarely any follow-up. To be meaningful we'd have to fund far more difficult and expensive ethnographic studies (aka "qualitative research"). We rarely do that.

I have two early thoughts about this particular study. The relatively trivial one concerns the "conditions" clause. This usually refers to ICD-9 coded diagnoses (sometimes DSM coded, which is a hacked offshoot of ICD-9). Since these diagnoses are crafted to meet insurance reimbursement rules they are strongly influenced by payment source. So they are not a reliable data source for this kind of study.

The more interesting discussion point concerns what is meant by "actually need them" and "cost-effective". We have personal experience, as we have one child whose consulting pediatric psychiatrist long offered the use of anti-psychotic meds. We were able to avoid their use, but only because we have relatively large resources in many dimensions. Managing some autism-spectrum/"explosive child" disorders without, or even with, the most powerful available medications is extraordinarily challenging.

Our choice to forego their use was not based on a great dislike of these medications. If we had failed we would have used them. We might need them in the future. It is rather that we had relatively great, but not inexhaustible, private resources. The differentiator was not what our insurance could pay, but rather what we by virtue of training, education, income and temperament were able to do.

No society, not even Sweden or Norway, would be able to provide similar resources to every needful child. We should expect antipsychotic medications to be used more often among those with fewer private resources.

Four times more often? That does need to be investigated -- but remember that the billing diagnostic data is suspect, and that many of these conditions have a hereditary compoment. They may impact the parents, and impacted parents will be far more common in the medicaid population (because, of course, their income will be very low).

Now that I've said all of the above, I'll switch to the other side of the debate. There are almost no medicaid psychiatrists, and even fewer medicaid pediatric psychiatrists. Heck, there are almost no psychiatrists anywhere. There is a smoldering crisis in the expert psychiatric care of poor children. I would be very interested in a study comparing the use of antipsychotic medications in medicaid American children vs. a comparable Canadian group. Even with all of the objections I've raised, I can believe this is a major contributor to the findings. We need either to pay medicaid psychiatrists far more money, or we need to find an alternative way to deliver psychiatric-type services to this population.

Motivation and performance - two versions

2009-12-01T15:09:00.005-06:00

A son of mine doesn't do all that well on his IQ tests.

Of course that's not the whole story. He's relatively good, for example, at "rationalia"; he can solve fairly complex problems that he cares about. This "reasoning" capability is now thought to be fairly distinct from IQ, this also explains why some very smart people make very odd choices.

The "cares about" part is relevant to two recent stories.

One concerns shoelace tying. We'd made very good progress, but then he seemed to lose interest and regress. So I was preparing for a new attack when, one day recently, he started negotiating for a book he wanted me to buy him (he's a bibliophile, sometimes he even reads them). I jumped on it as a reward for what I estimated would be a 2-3 weeks of practice to achieve a goal of 5 successful ties on two on-foot shoes.

My son instead insisted he could do it immediately. Skip the training - go straight to the test. I demurred; I feared he'd get frustrated and meltdown. We worked out the details and, of course, he immediately completed the test and got the book.

The second story concerns my locked down iPhone. He's shouldn't to be able to access the web browser. Except that he discovered a back door through a generated hyperlink within a Twitter app he uses that gave him an embedded browser view he could manipulate. He's not supposed to be smart enough to hack my bleedin' phone.

I don't think his IQ tests are wrong. I do think there's a bit they don't quite capture.

Special education and assistive technology for OS X

2009-11-22T11:55:00.002-06:00

Apple has revised two pages on their web site related to special needs (adaptive, assistive) technology:

The first two are now current with Snow Leopard, though I'm personally deferring an update to that Intel-only platform until either April 2010 or a new machine.

I don't see anything equivalent to Don Johnston's Co:Writer word prediction software, however 10.6 includes a new (I don't think this is in 10.5) word completion feature:

... Students can avoid spelling mistakes and reduce keystrokes with the word completion feature of the Mac. After typing a few characters, pressing the Escape key opens up a menu of words to choose from beginning with the characters they typed. It highlights correct word usage, and it’s available in most applications...

Co:Writer might work in an XP or Win2K VM, though I was unable to find any data on that.

Update: There is an OS X version of Co:Writer, it's being updated for 10.6. I realize that Don Johnston sales are almost entirely to schools, but I do think he might market it a bit. At the very least it ought to be listed on Apple's accessibility site. I'll write him about that.

The homework workstation account

2009-11-21T19:53:00.006-06:00

My 12 yo is a computer problem. He has trouble getting off the computer when his time is up [1] and, if not supervised, he visits inappropriate web sites.

On the other hand, his computer skills are a relative strength now. In the future they'll be the foundation for the cognitive aides he'll live with for the rest of his life. So I want to build those skills.

He's long had his own user account on our MacBook, with OpenDNS filtering and Parental Controls logging. He can use that with close supervision, but it's not appropriate for lightly supervised homework.

So I've created a new "homework" account that's really locked down ...

Be the Best You can Be: A simple English wikipedia

... I subsequently configured a user account on the family MacBook restricted through Parental Controls to Tar Heel Reader and Simple Wikipedia. This is effectively a homework account, in addition to the web readers it includes Calculator, Grapher, Dictionary/Thesaurus, Google Earth, AppleWorks and the weather, time and calendar widgets...

The homework account is useable with much less supervision than a standard account. In time I might make this available to all the children without time restrictions.

[1] I do too, but I'd hope right off if I faced the consequences he gets. The inability to adjust behavior to consequences is one of the gravest disabilities for many "explosive" children. That's why the fights we have are also valuable. If he can learn to manage the timed computer intervals, then he will have acquired a critical skill. Lately he's done quite well with an iPhone Timer running next to him. He likes the look of it, and the way the numbers move down. Even the alarm sound works. With this setup, and years of struggle, he's doing pretty well. Timer skills are key for him, so this is a double win.

A simple English wikipedia

2009-11-17T21:18:00.003-06:00

The Simple English wikipedia was designed for people learning English ...

Simple English Wikipedia

This is the front page of the Simple English Wikipedia. Wikipedias are places where people work together to write encyclopedias in different languages. We use simple English words and grammar here. The Simple English Wikipedia is for everyone! That includes children and adults who are learning English...

Of course simple words are also helpful for many special needs readers.

This resource is worth further exploration.

Update 11/21/09: My 12 yo is comfortable reading the simple Wikipedia articles. That's not to say he volunteers to read them, but he's willing and able to read them to earn stickers towards Wii or web time.

I subsequently configured a user account on the family MacBook restricted through Parental Controls to Tar Heel Reader and Simple Wikipedia. This is effectively a homework account, in addition to the web readers it includes Calculator, Grapher, Dictionary/Thesaurus, Google Earth, AppleWorks and the weather, time and calendar widgets.

There was one catch. Simple Wikipedia (and wikipedia) are not compatible with Apple's "Parental Controls". It took all my geekery to figure out a solution (see last update).

IQ and reasoning - not quite the same thing

2009-11-01T10:07:00.001-06:00

This Scientific American article was written about smart people who don't reason very well (Mensa specializes in this group)...

Rational and Irrational Thought: The Thinking That IQ Tests Miss: Scientific American

No doubt you know several folks with perfectly respectable IQs who just don’t seem all that sharp. The behavior of such people tells us that we are missing something important by treating intelligence as if it encompassed all cognitive abilities. I coined the term “dysrationalia” (analogous to “dyslexia”), meaning the inability to think and behave rationally despite having adequate intelligence, to draw attention to a large domain of cognitive life that intelligence tests fail to assess.

The converse, of course, would be people with lousy IQs who still reason fairy well. They are able to solve real world problems much more effectively than IQ test problems.

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Shoelace tying - this approach worked

2009-10-31T13:37:00.005-05:00

This worked.

More than coordination or sequencing or geometry, the problem is frustration and discouragement. The key is to drop the skill down to something that is sure to work, then succeed at that, then add another skill. If failure occurs drop back a skill level. When a skill level is secure, move up.

We practiced with a shoe on his leg, and good lace length.
A practice session of ten tie-related acts earned 10 min of screen time (Wii, web, game).
I started out holding one lace, looping the other one over it, and then my son had only to pull the second lace through.
Then we graduated to the bottom tie.
Then I would do the bottom tie and I would hold two loops, positioning one so it had only to be pulled through the other. (For a while I used thread to bind the loops. That was useful as well.)
Then I would hold only one loop.
Then he started tying the loops.
Then he did the entire tie.
Then he started working with the shoe on his lap.
Lastly with the shoe on his foot.

In retrospect, this seems blindingly obvious. In reality we flailed around with this for years; if we'd started out this way we could have succeeded long ago. We'd left this task largely to the therapists that were supposed to know how to teach it, but in the end we had to develop our own curriculum. Not the first time for that.

The training approach has other applications.

PS. I owe this training methodology to Steve Yelon of MSU's OMERAD program. He developed this approach when doing skills teaching for the US Secret Service.

Courage Center Camps on Facebook

2009-10-29T16:41:00.000-05:00

Courage Center has a Facebook page where they're putting events information such as the Dec 19th alumni Holiday Party:

11:00 AM- 4:00 PM Saturday December 19, 2009

• Soup and sandwich luncheon
• Hayrides
• Cookie decorating
• Sledding
• Snowshoeing & Cross county skiing
• Campfire & songs

See: Camp Courage Minnesota: Teaching reading to persons with cognitive disorders

Assistive communication app for the iPhone and iTouch

2009-10-28T22:23:00.001-05:00

Gradually, developers are turning the iPhone into an assistive technology device.

Proloquo2Go: Assistive communication for the iPhone and iPod touch

...Proloquo2Go [iTunes Link] is not your usual iPhone/iPod touch app. It turns the mobile device into a full augmentative and alternative communication device ...

...When signing is not available or appropriate, using an AAC device may well be. AAC devices use combinations of symbols, words, sounds and technology to allow people without functional vocal abilities to communicate. The cost of such devices range from around US$3,500 to US$8,500 for something about the size of a Speak and Spell...

...In contrast, the Proloquo2Go app has a price of US$189.99...

At the moment medicare doesn't reimburse for the app and iTouch, since there's a well intended but obsolete single-purpose device rule with medicare. That's likely to change.

It will be interesting to see how the worldwide market will transform these kinds of solutions, both on the iPhone and on Android.

New world.

--
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Behavior management and special needs children

2009-10-28T15:49:00.002-05:00

I’m putting together a list of posts and references related to the adaptation of animal training methods to the behavior management of special needs humans …

Not much so far, but I’ll add more.

Update 2/18/2010: added many more.

Unexpected wins and special needs

2009-10-24T11:05:00.006-05:00

I’m reasonably good at predicting what two of my children will like and do.

I’m much less accurate at predicting the interests and abilities of my most exceptional son. Sometimes I guess high, but more often I guess low.

When we started playing baseball, I never thought he’d be a competitive and eager ballplayer. His recent soccer playing was completely unexpected. Yes, he is the weakest player on his school team – but he continues to go to practices.

He’s learned more math than I expected he would. I’m glad I listened to the advice of the mother of a girl with Downs syndrome. She told me her daughter got more out of sitting in mainstream history classes than she’d expected.

Today, though, he really surprised me. We’ve had great struggles with him getting off the computer when his earned time has ended. This is where multiple disabilities meet; the limited effectiveness of any punishments or of delayed rewards, frontal lobe dysfunction, ADHD, time perception, limited flexibility, frustration, lock-in, planning issues, and typical adolescent maternal/son power struggles exacerbated by all of his disabilities.

These challenges had led to a rule that both parents had to be present for his computer use; mostly so I could be the enforcer.

A difficult situation, but these challenges are also opportunities. He’s fighting over something he wants to do, but it’s extremely hard for him. It tests his weaknesses. To succeed he must develop new skills and strategies that will work in many life situations. The prize is worth the struggle.

His younger sibs don’t have the dual parent constraint. For my son, this indignity was the last straw. He was ready to deal, and he knew we had a strong position. Nine years of living the Greene approach have made him a seasoned negotiator.

The deal was that he’d use a countdown timer on one of our phones. He had to stop use immediately on the alarm with no parental words at all (it helps this is an iPhone alarm – tasteful and elegant). He had to do this five times in a row. If he succeeded he would revert to having the same privileges as his siblings. I wrote out the rules and five checkboxes and put it on the kitchen wall.

He succeeded on his first run, somehow managing to earn 5 wins in 3 days. (It hadn’t occurred to me that he could take his computer time in shorter segments, thereby shrinking his trial period. I’m intrigued by his intuitive ability to invent strategies like this – without being able to verbalize them.)

So he’s back on the same routine as his sibs – though he’s obligated to forever use the timer. Timer skills, of course, are very helpful for ADHD children and adults. As we’d planned.

Of course I expect he’ll regress. We’ll be back to the struggle again, and he’ll have to earn another five checks in the row. (As I wrote this, however, he completed a 10 minute segment brilliantly – stopping a game in mid-move. I’d have bet $40 he wouldn’t do that.)

Whatever happens now, victory is ours. We now know he can do this, eventually we will win. We, as in he and us.

This afternoon we try mainstream hockey. Another giant challenge. He has many more challenges in his life than I do.

Ok, maybe not many more. Comparable, anyway.

Update 2/18/2010: We still struggle with the computer, but we've definitely made progress. I'd forgotten we used this program (my own disabilities - aging brain) and I might try it again. He did succeed in the hockey program -- really better than I thought he would.

Accelerated aging in special needs caregivers

2009-10-17T19:56:00.001-05:00

The 2009 Nobel Prize in Medicine was given for research on aging, including research on telomere shortening (a marker of accelerated aging) related to stress. When I first read of this in 2004 I learned the research was done on women caring for sick children.

Yes, fellow special needs caregiver, it’s not just your imagination. You are getting older faster.

So what can we do?

Well, first I’ll make the case for why we should invest some of our precious time to longer living. For one thing we know we’re going to be parenting until we check out. We need to stay healthy to do that, so investments in health can be justified by parenting mission as well as selfish priorities.

So you should be sure to … err … uhh …

Actually, we don’t know if there’s anything that can lesson this accelerated aging, and we’re sure there’s no way to reverse it. The best we can do is make some educated guesses …

Sleep may be more important than we’ve suspected. So we may need to weight it more highly than even diet or exercise. Don’t sacrifice sleep for exercise – it may be an unwise trade.
Don’t smoke. Of course nobody should, but it’s even worse in our situation.
Watch your stressing. Sometimes we treat stressing as a badge of honor, but it’s probably bad in itself.
Exercise.
Keep your social networks. Best of all – exercise with friends.
Eat good, eat less.

Exercise and sleep are the problem. They both suck time, and time is one of the things we don’t have. This research doesn’t help make time, but it does give us different priorities.

Oh, and probably stresses us too.

Incidentally, unless Obama’s health care reform passage works, you can expect questions from your health insurer about sick or special needs children. They’ll want to be sure to avoid insuring us …

Understanding why reading is hard

2009-10-17T18:52:00.001-05:00

I’ve been fascinated by the evolutionary neurobiology of reading since about 1980, when I was an exchange student at Williams College studying neurobiology. That’s when I realized that human reading was preposterously strange. It was a novel idea at the time, but I didn’t pursue it. Now, thirty years later, reading is finally being recognized as a bizarre human achievement.

I particularly appreciate this essay of Maryanne Wolf, hidden inside a NYT blog posting. Here she is concerned about how reading will develop as we move away from paper …

Beyond decoding words – Maryanne Wolf (NYT blog Oct 2009)

Maryanne Wolf is the John DiBiaggio Professor in the Eliot-Pearson Department of Child Development at Tufts, and the author of “Proust and the Squid: The Story and Science of the Reading Brain.”

After many years of research on how the human brain learns to read, I came to an unsettlingly simple conclusion: We humans were never born to read. We learn to do so by an extraordinarily ingenuous ability to rearrange our “original parts” — like language and vision, both of which have genetic programs that unfold in fairly orderly fashion within any nurturant environment. Reading isn’t like that.

Each young reader has to fashion an entirely new “reading circuit” afresh every time. There is no one neat circuit just waiting to unfold. This means that the circuit can become more or less developed depending on the particulars of the learner: e.g., instruction, culture, motivation, educational opportunity. [jf: and individual biology, which she bizarrely omits from this list]

Equally interesting, this tabula rasa circuit is shaped by the particular requirements of the writing system: for example, Chinese reading circuits require more visual memory than alphabets. This “open architecture” of the reading circuit makes the young reader’s developing circuit malleable to what the medium (e.g., digital online reading, book, etc) emphasizes.

And that, of course, is the problem at hand. No one really knows the ultimate effects of an immersion in a digital medium on the young developing brain. We do know a great deal, however, about the formation of what we know as the expert reading brain that most of us possess to this point in history.

In brief, this brain learns to access and integrate within 300 milliseconds a vast array of visual, semantic, sound (or phonological), and conceptual processes, which allows us to decode and begin to comprehend a word [1]. At that point, for most of us our circuit is automatic enough to allocate an additional precious 100 to 200 milliseconds to an even more sophisticated set of comprehension processes that allow us to connect the decoded words to inference, analogical reasoning, critical analysis, contextual knowledge, and finally, the apex of reading: our own thoughts that go beyond the text.

This is what Proust called the heart of reading — when we go beyond the author’s wisdom and enter the beginning of our own.

I have no doubt that the new mediums will accomplish many of the goals we have for the reading brain, particularly the motivation to learn to decode, read and experience the knowledge that is available. As a cognitive neuroscientist, however, I believe we need rigorous research about whether the reading circuit of our youngest members will be short-circuited, figuratively and physiologically.

For my greatest concern is that the young brain will never have the time (in milliseconds or in hours or in years) to learn to go deeper into the text after the first decoding, but rather will be pulled by the medium to ever more distracting information, sidebars, and now,perhaps, videos (in the new vooks).

The child’s imagination and children’s nascent sense of probity and introspection are no match for a medium that creates a sense of urgency to get to the next piece of stimulating information. The attention span of children may be one of the main reasons why an immersion in on-screen reading is so engaging, and it may also be why digital reading may ultimately prove antithetical to the long-in-development, reflective nature of the expert reading brain as we know it…

Now if we could just figure out how to actually make some of this knowledge useful in teaching reading to children who struggle with it.

[1] Some very recent breakthroughs have expanded this understanding – The evolutionary wonder of reading – hints from intracranial electrophysiology.

Special needs criminals

2009-10-07T21:19:00.015-05:00

The average IQ of an inmate is about 87. Since 75 is usually considered mental retardation, there are a lot mentally retarded persons in prisons. Even the average prisoner is borderline retarded.

In addition to very low IQ, about half all prisoners meet DSM-IV criteria for ADHD.

Prisoners are a special needs population.

Hold that thought. Now, readers with children on the "explosive" spectrum, raise your hand if you have not contemplated your future adult child behind bars. Ahh, as I expected. No hands are raised.

We know some of our children don't respond normally to near term consequences - much less long term consequences. They pretty much only respond to immediate consequences and rewards. The future, for them, is a foreign land.

People studying prisoners, have come to similar conclusions from a different direction ...

Economic View - A Smarter (and Cost-Efficient) Way to Fight Crime - NYTimes.com

LAW enforcement policy in the United States rests implicitly on the “rational actor” model of traditional economics, which holds that people take only those actions whose benefits exceed their costs.

This model says that crime will be deterred if the expected punishment is strong enough — a prediction that has not been borne out in practice...

Mark Kleiman, a professor of public policy at the University of California, Los Angeles, says there is a better way. In a new book, “When Brute Force Fails,” he argues that instead of making punishments more severe, the authorities should increase the odds that lawbreakers will be apprehended and punished quickly.

... most criminals are not the dispassionate rational actors who populate standard economic models. They are more like impulsive children, blinded by the temptation of immediate reward and largely untroubled by the possibility of delayed or uncertain punishment.

The evidence suggests that when hardened criminals are reasonably sure that they will be caught and punished swiftly, even mild sanctions deter them. But not even the prospect of severe punishment is effective if offenders think they can get away with their crimes...

... Experimenters have found, for example, that even long-term alcoholics become much less likely to drink when they are required to receive a mild electric shock before drinking. Many of these same people were not deterred by their drinking’s devastating, but delayed, consequences for their careers and marriages...

Mr. Kleinman advocates a particular policing strategy that is effectively designed for a special needs population. The idea is to concentrate resources to increase the probability of capture for a targeted subgroup. The theory is this group will respond to the probability of capture -- perhaps even if the actual punishments are less severe (hence less costly). They will then change their behavior, which frees up resources to target the next sub-group (dynamic policing).

Reducing criminal behaviors is one outcome that police, wardens and parents can all agree on.

In the meantime, and in the hope of avoiding outsourcing grown child housing and care responsibilities to the penitentiary, it's useful to think about that punishment/probability of detection equation when trying to change the behavior of special needs children.

It's not the intensity or duration of the consequences that we should be thinking about, it's ensuring a high probability that any misdemeanors will be rapidly detected. The focus is on vigilance ...

This a really bad idea ...

2009-10-06T21:59:00.009-05:00

A woman decides to try treating her son's autism with cannabis..

Not surprisingly, since she wrote an article about it, she feels he's doing well.

This is such a bad idea -- though I can understand why a parent might be so desperate they might try it.

Let me name the reasons why you shouldn't consider following along ...

Cannabis is not a placebo. Cannabis is not a "safe" but worthless herbal remedy. Cannabis is big-time pharmacologically active stuff. It has tons of effects. Maybe some of those efffects will help some brains; there's some thought that it accelerates neuronal connection death -- and that could even be therapeutic. Probably other effects will hurt other brains. Maybe it will both hurt and help. Maybe it will help for a while, then really hurt. Nobody knows.
Anyone remember thalidomide? It was supposed to be great for morning sickness, which is why it was given to my Canadian mother. In the US though the FDA didn't approve it. (My mother didn't take it, so I have all my limbs.) I don't think the FDA approves of treating neuroconnectopathies with cannabis.
People running an experiment are famously fabulously lousy judges of how well it works -- even when they're not deeply invested in declaring success.
The placebo effect on aggression can be enormous. Even if the Cannabis was marginally helpful, or somewhat harmful, we should expect a very large placebo effect in this kind of experiment.
Any parent with judgment this bad (or desperation this great) is going to be a very poor scientist. So even if we disregard the experimental design (open) and placebo effect, we should still be very skeptical of this report.
Heck, let's try Scotch. LSD. Heroin. Maybe all three, in combinations. On alternate days. When you're going to experiment on this scale, there are no limits.

Ok, but even if running this radical experiment on your child is a very bad idea, could cannabis play some useful role someday in treating some autism spectrum disorders? Well, in 2004 I wrote of the endocannabinoids ...

[a] .... book I've quite appreciated, written by an adult who'd suffered from severe ADHD/Explosive disorder, emphasized how severe his withdrawal syndrome was from marijuana, and provided anectdotal evidence that for children with ADHD marijuana is a particularly disruptive drug.

Given all of the above, it does not seem to be a great leap to a speculative relationship: Buspirone and endocannabinoids and "Explosive Disorder"/ADHD.

An interesting axis to explore. So I fired up scholar.google.com and entered the search terms: endocannabinoid buspirone. Intriguingly that led to the article cited here, a mouse study [found that] Endocannabinoid CB1 disruption did produce a peculiar mouse behavior -- anxiety/withdrawal in unfamiliar settings, aggression/activity in familiar settings. Hmmm. That sounds interesting.

It will be very interesting over the next few years to see how the Buspar, endocannabinoid, CB1, ADHD, PDD, explosive child, EBD, CCBD (complex cognitive behavioral disorder) axis evolves. Look for some interesting work on children with EBD using PET scans and Buspar. We are probably five to ten years from well understood therapies however -- even if this relationship holds up...

Yes, there are lots of reason to be curious about the endocannabinoids -- in animal studies.

Just don't do this on your kids.

Managing net access

2009-10-06T19:36:00.003-05:00

Computer misuse isn't a uniquely special needs problem, but problems with abstract concepts of trust and responsibility can make things harder.

After discovering the limits of our supervisory capabilities we're augmenting them per this post ...

Gordon's Tech: Web filters - return to OpenDNS

... I figured we could restrict access to watched machines. Yeah, if we weren't so distracted that might work. The logs, though, tell me that ain't doin' it.

Multiple computers with multiple accounts on each computer doesn't help. Neither does running OS X, there's not much of a market for OS X access management (see: Children Online: Web Filters); they are sold but I can't find any reviews from anyone I trust [1]. There might be a market except Apple bundled Parental Control into the OS.

Oh, wait, why not use Apple's Parental Control features? Because they're $#!$#!$ broken and they've been $&*^%^% broken for years...

Different minds, Different paths

2009-10-01T08:24:00.002-05:00

In most anything to do with thinking, my eldest son and I aren’t in the same league.

For now. In 25 years, if I’m still living, we might be a lot closer.

Even so, every so often, he solves some problem better than I can.

It’s not only the near-savant visual processing abilities that help him find his (frequently) lost brother. Nor his exceptional navigation skills that have corrected my driving since he was about 3 years old. He also has an unusual ability to come up with good solutions to sequencing/routing traveling salesman type problems. That might be why, when he’s in the mood, he’s very good at the game ThinkFun RushHour (traffic jam).

I was reminded of that this morning on the way to work. We were chatting about how we’d manage some family routing issues on the way to work, and, seemingly without effort, he gave me the answer I’d missed.

So my challenge, as ever, is to figure out how he can leverage what he’s good at, while managing the things he can’t do. Being the best he can be …

Mobile phone use with special needs children – more lessons learned

2009-09-26T19:45:00.004-05:00

Three months ago, as grade school ended, we let our 12yo son carry a T-Mobile PayGo phone (an old phone we had lying around, unlocked after its AT&T contract ended).

We did the usual thing with posting rules and so on – but they were soon forgotten. In fact, I only remember the rules because I reread my prior post!

So how did it go? Was our son able to handle the complexities of a semi-modern cell phone? (His Nokia is much harder to use, for example, than an iPhone)

It has gone well and he’s done well with the phone. I think having the phone connection to us has been terribly important during his first weeks in Junior High. It’s been a great self esteem boost – one of the few times he can resemble his neurotypical classmates. We had some concerns that he was pestering a former classmate, but we’ve checked into that and it’s good so far. He’s proud of his phone, and careful with it.

On the other hand, he burnt through the T-Mobile minutes pretty fast. I also discovered that, contrary to expectations, I couldn’t get any information from the T-Mobile site on what numbers he was calling. That made me nervous.

After he went through $10 in a week I gave up on the Pay-G plan sand moved his phone to our AT&T family plan ($10/month, $20-$30 or so fee for the new number).

I want him to text as a way to develop some basic communication and writing skills so I signed up for that great 21st century scam – the text plan (200 messages/month, but remember one pays to receive (grrrrrr) as well as send, so this is only about 3 messages sent a day).

I hated to pay for the text messaging, but if it helps him with written language it’s well worth much more. I also opted to try another $5/month service - “Smart Limits for Wireless”. It includes …

Text/IM Limits: I set to 100
Download Limits: I set to zero since he doesn’t have a data plan.
Browsing Limits: Also set to zero
Time of Day Restrictions: none yet
Allowed Numbers: these are numbers one can use even during restricted times. None yet.
Blocked Numbers: Useful if he’s harassing someone
Content Filters

I limited him to about 100 text messages, so with those he receives he might stay under 200. The big thing is the IM limits and the tracking. I’ll report back on how well it works.

I didn’t want to deal with Voice Mail, so I set the phone to forward to a Google Voice number that sends me transcriptions of any messages.

So far this has been a successful experiment. If it continues to go well I may get him a used iPhone with a data plan – so he can carry a much more powerful aide.

Update 10/6/09: Still very successful, and much more essential than I'd expected. Junior High School is somewhat unpredictable, and having a cell phone when soccer is canceled sure helps.

Abercrombie & Fitch humiliation of autistic child - no apology

2009-09-08T22:00:00.004-05:00

There's a sickness in the culture of this clothing retailer. Emphases mine.

Abercrombie & Fitch fined in MOA discrimination case | StarTribune.com

A judge ordered retail giant Abercrombie & Fitch to pay $115,000 for discriminating against a 14-year-old autistic customer at its Mall of America store.

The civil penalty, the largest of its kind in at least two years, came four years after store employees refused to let the autistic teen join her older sister in a fitting room because of the clothing chain's anti-shoplifting policy. The store refused to relent even after the sister, and later the girls' mother, explained that the 14-year-old couldn't be alone because of her disability.

The confrontation humiliated the girl, who testified that the incident made her feel like a "misfit."

"She was singled out and required to hear her sister and mother repeatedly ask for accommodations based on her disability, in front of a long line of customers, at a store that markets itself to young people as a purveyor of a particularly desirable 'look' " administrative law judge Kathleen D. Sheehy declared in her ruling.

When several complaints to the company were ignored, the girl's mother, Elizabeth Maxson of Apple Valley, took the case to the Minnesota Department of Human Rights. The investigation encountered fierce resistance from Abercrombie & Fitch, a New Albany, Ohio-based company that posted $3.5 billion in revenues last year. The company even denied that the girl, identified only as M.M. in court documents, had a disability until the first day of the administrative law hearing in April. She was diagnosed as autistic at the age of 2.

In her ruling, Sheehy found that Abercrombie & Fitch violated the Minnesota Human Rights Act and ordered the company to pay the girl $25,000 for mental anguish and suffering. The company also was ordered to pay $25,000 to the state as a civil penalty, $41,069 in attorney's fees, $20,441 to the human rights department for its expenses and $3,753 in other expenses.

Abercrombie & Fitch also was ordered to post signs in its seven Minnesota store explaining that disabled individuals should seek out a sales associate to obtain an exception to the company's policy allowing only one person in the fitting room at a time. The company also must provide an hour of training for all employees in Minnesota who interact with the public to make sure they understand how to help disabled customers.

Abercrombie & Fitch has appealed the fine to the Minnesota Court of Appeals.

Four years. That's how long the Maxson family had to fight this, while Abercrombie's lawyers sat back and waited for them to give up. Even so the fine is pathetically small; for a company this size a meaningful fine would be on the order of $100 million, not $100 thousand.

Even so, Abercrombie and Fitch not only fails to apologize, they appeal the fine. Minnesota clearly needs much bigger fines.

This is the same company that features this diversity statement on their web site:

... Developed and launched a comprehensive training curriculum. It includes e-learning based programs focused on diversity awareness and skill building, as well as, an innovative and provocative approach to education that we call reality-based learning. This approach is unique in that we base the learning on real-life issues that may take place in our store environment and reflects our work culture. The training scene is enacted by actors/inclusion experts during the training program, so that we can generate an interactive dialogue about how to solve relevant management issue...

Of course this statement follows a 2005 class action lawsuit for discrimination. Abercrombie and Fitch paid out $50 million for that one, but it obviously didn't touch their corporate culture.

This is one retailer we can do without. Don't shop there.

Special needs: Mobile communications and surveillance

2009-09-06T20:23:00.007-05:00

Posting has been light over the summer. It's been a great summer for us, with all of our children, diverse and neurotypical alike, making progress on different curves.

Now things will pick up again. Our Aspie dude is more assertive about doing his own thing, which means we have to work harder to get him the things he needs but doesn't want. Our complicated guy is entering junior high, which means we have a lot less control and awareness of what's going on.

There's guaranteed turbulence ahead, which should make for more posts.

In the meantime, I've been moving forward on the mobile/messaging strategy I outlined a few months ago ...

Be the Best You can Be: Special needs and mobile phones: Why we're starting young

... We are starting out with a minimal cost phone and a simple pay-as-you-go T-Mobile plan. When the money is spent the phone stops working until we 'refuel'. For now we share a single number and phone, though if Google Voice ever goes live each child will get a lifelong GV number....

Recent events showed that we made the right call on the cell phone. When our eldest ran off into a crowd of 300,000 people or so a combination of his exceptional navigation skills and the "child phone" meant we didn't need to fuss with police searches.

Now, since Google Voice has opened up, I've also gotten him a Google Voice number and email through our Google Apps family domain. Both of these are under our control -- so his voice mails get routed to both parents as do all his incoming email. I also have the ability to track his outgoing emails. He won't have access to the Google Voice or Google email credentials until he's older. The Google Voice number will be his for life.

My next question will be whether to stay with current T-mobile phone or move him to a smart phone (Android or iPhone). It would be very helpful to be able to track his movements by his phone. We can be do that through AT&T's tracking service (designed to track children) on any phone (if we move him to AT&T), through Latitude on an Android phone or Blackberry, and through MobileMe on an iPhone.

Yes, he'll be entering his teen years under close surveillance, though I'm expecting he won't know of it. This guy gives new meaning to the world 'vulnerable'. Over time I hope we all succeed enough that he migrates from surveillance to on-demand-assistance using the same infrastructure.

Neurodiversity moves closer to mainstream

2009-08-04T17:59:00.000-05:00

Asperger’s Syndrome, on Screen and in Life is a NYT article about several new movies and books about Asperger's syndrome.

It could be considered a marker in a social movement towards greater acceptance of, and adaptation to, neurodiversity.

Scientific American goes nuclear on Ritalin

2009-07-25T20:55:00.004-05:00

Edmund Higgins, a clinical associate professor [1], has written a blistering attack on Ritalin, and gotten it published in Scientific American – a magazine that’s presumably sharing the industry’s revenue problems.

Dr. Higgins compares Ritalin (methylphenidate) to methamphetamine. This is the rhetorical equivalent of comparing a human to Hitler; it’s chemically correct but it’s the mark of a crank. It’s a Godwin’s Law violation.

On the other hand, as someone who’s child has been on Ritalin and other ADHD meds for years, I’ve long had the same sort of concerns. Ritalin has an astounding safety record, but we’re messing with the neurochemistry of a rapidly evolving brain over a period of years and decades. I personally wouldn’t use this, or any other, long-term psychiatric medication medication in my child unless all other options had been exhausted and the disability and risks of non-treatment were severe. I’ve previously made the comparison to treating cancer. Nobody should expose a child to life threatening chemicals with severe long term effects– unless the alternative is worse.

Another point in Higgins favor is his interest in animal models. Given the immense difficulty of studying psychiatric medications in children, animal models are pretty much all we’ve got. So let’s see what he says about the animal models, stripping out some inflammatory rhetoric and considering only studies of meds used to treat ADHD. Note that much of this research is more recent that a 2006 review of mine that was pretty reassuring, but that means it won’t have been validated by other researchers …

Do ADHD Drugs Take a Toll on the Brain?: Scientific American

Edmund S. Higgins is clinical associate professor of family medicine and psychiatry at the Medical University of South Carolina and co-author, with Mark S. George, of The Neuroscience of Clinical Psychiatry (Lippincott Williams & Wilkins, 2007) and Brain Stimulation Therapies for Clinicians (American Psychiatric Publishing, 2009).

… In an experiment published in 2003 psychiatrist Eric Nestler of the University of Texas Southwestern Medical Center and his colleagues injected juvenile rats twice a day with a low dose of methylphenidate similar to that prescribed for children with ADHD. When the rats became adults, the scientists observed the rodents’ responses to various emotional stimuli. The rodents that had received methylphenidate were significantly less responsive to natural rewards such as sugar, sex, and fun, novel environments than were untreated rats, suggesting that the drug-exposed animals find such stimuli less pleasurable. In addition, the stimulants apparently made the rats more sensitive to stressful situations such as being forced to swim inside a large tube. Similarly, in the same year psychiatrist William Carlezon of Harvard Medical School and his colleagues reported that methylphenidate-treated preadolescent rats displayed a muted response to a cocaine reward as adults as well as unusual apathy in a forced-swim test, a sign of depression.

In 2008 psychopharmacologist Leandro F. Vendruscolo and his co-workers at Federal University of Santa Catarina in Brazil echoed these results using spontaneously hypertensive rats, which—like children with ADHD—sometimes show attention deficits, hyperactivity and motor impulsiveness. The researchers injected these young rats with methylphenidate for 16 days at doses approximating those used to treat ADHD in young people. Four weeks later, when the rats were young adults, those that had been exposed to methylphenidate were unusually anxious: they avoided traversing the central area of an open, novel space more so than did rats not exposed to methylphenidate. Adverse effects of this stimulant, the authors speculate, could contribute to the high rates of anxiety disorders among ADHD patients…

… In February 2009 neuroscientists Yong Kim and Paul Greengard … injected … mice with either methylphenidate or cocaine daily for two weeks. Both treatments increased the density of tiny extensions called spines at the ends of neurons bearing dopamine receptors in the rodent nucleus accumbens. Compared with cocaine, methylphenidate had a somewhat more localized influence; it also had more power over longer spines and less effect on shorter ones…

Furthermore, the scientists found that methylphenidate boosted the amount of a protein called ΔFosB, which turns genes on and off, even more than cocaine did…

So when I strip out everything else, the bulk of Higgins’ article is coming from 3 animal studies in 2003, 2008, and 2009. All of the studies involved injecting methylphenidate, which is not how it’s used in humans. Injecting Ritalin is a mark of abuse with pretty different pharmacology from oral use.

The most interesting of these articles is Nestler et al in 2003 [2], an article with a rather strange title (emphases mine – incidentally, Nesler is the last listed author, so why did Higgins credit the study to him?) …

Methylphenidate treatment during pre- and periadolescence alters behavioral responses to emotional stimuli at adulthood.

Bolaños CA, Barrot M, Berton O, Wallace-Black D, Nestler EJ.
Department of Psychiatry and Center for Basic Neuroscience, University of Texas Southwestern Medical Center, Dallas, Texas 75390-9070, USA.
Biol Psychiatry. 2003 Dec 15;54(12):1317-29.

BACKGROUND: Methylphenidate (MPH) is a psychomotor stimulant medication widely used for the treatment of attention-deficit/hyperactivity disorder (ADHD). Given the extent of prescribed use of MPH, and because MPH interacts with the same brain pathways activated by drugs of abuse, most research has focused on assessing MPH's potential to alter an individual's risk for adult drug addiction. Data examining other potential long-term behavioral consequences of early MPH administration are lacking, however. METHODS: We investigated the long-term behavioral consequences of chronic administration of MPH (2.0 mg/kg) during pre- and periadolescent development in adult rats by assessing their behavioral reactivity to a variety of emotional stimuli.
RESULTS: The MPH-treated animals were significantly less responsive to natural rewards such as sucrose, novelty-induced activity, and sex compared with vehicle-treated control animals. In contrast, MPH-treated animals were significantly more sensitive to stressful situations, showed increased anxiety-like behaviors, and had enhanced plasma levels of corticosterone.
CONCLUSIONS: Chronic exposure to MPH during development leads to decreased sensitivity to rewarding stimuli and results in enhanced responsivity to aversive situations. These results highlight the need for further research to improve understanding of the effects of stimulants on the developing nervous system and the potential enduring effects resulting from early-life drug exposure.

Why did I say that was a “strange title”? Because an article on rats in a journal called Biol Pyschiatry would normally contain the word rats in the title.

If we simply scaled the dose to humans, but the way, this would be 80 mg (twice daily?!) by injection – which would be a whopping abuse dose in humans. The article has gotten very little attention in the past six years, being cited only four times of which two appear to be reviews.

A related articles query produced a very large number of similar rat studies, including one that, surprisingly, found no effects (surprisingly, because these look like “fishing expedition” studies, when you include publication bias they almost always show some effect.) These are boom times for rat studies of methylphenidate, probably reflecting new NIH funding.

On review I’m left with several only mildly related conclusions …

I’m happy the animal studies are being done. I’d like to see fewer fishing expeditions, and more replication of results. For example, repeat the Bolanos study with a larger group, maybe a different clonal line, and see if the same results appear. These need to be registered studies, so we don’t get messed up by publication bias (which is a huge problem in the low cost animal studies domain). I would really like to see more studies of tolerance effects in rats.
Higgins may turn out to be correct (lots of people are suspicious that stimulants can be used so long, including me) but I think he’s got a crank agenda. His article is more inflammatory than the evidence supports. A more sober article would have been welcome.
You shouldn’t put children on psychoactive medications without a very good reason. Of course that was always true.
Don’t assume any other medications are in any way safer – Ritalin has been studied far more than, say, Stratera.
Scientific American is running out of money. We’ll know they’ve hit rock bottom when they do an article on the scientific evidence for Creationism. They should have known better than to publish this article in its current form.

[1] I have a similar sort of title today, and have had similar roles in the past. In the hierarchy of academia, this title carries less glory than research assistant.

[2] Parenthetically, why does PubMed make it so very hard to find the link to a citation? It’s like they’re trying to hide things.

Autism Society of America: Summer Tips

2009-07-13T19:35:00.002-05:00

Last summer we passed on our experience with years of autism on the road. It was tough when the kids were younger, but our last few trips have been fairly agreeable. They even did pretty well when my back put me flat on the van floor for a few days.

We're going for another two week road trip this August, and everyone's looking forward to it.

So we can vouch for some of these Autism Society of America Summer Travel Tips (my comments in square brackets)

Plan in advance. Call ahead and inform the airline, hotel, resort and cruise line of the individual’s situation and inquire what special accommodations - fridge, inside room - are available. [We stick with road trips or relatively solitary low stimulation cabins. I don't think we'd try a cruise. Fridge inside the room - definitely. Calling ahead? Never have. It would just make most places too anxious.]

Bring the individual’s bedding if you think that will make him more comfortable. [We bring "blankies" and other comfort objects.]

Be realistic in selecting vacation destinations with environments you believe the individual can handle. [We like to get experience first in more limited environments. We've gradually extended our airplane distance.]

Book low season on a cruise or at a resort so there will be fewer guests and the staff will have more time to devote to your needs.

Travel by car if flying or other public transportation seems too difficult. [Definitely.]

Choose hotels/motels with kitchen suites or room service so you can eat some of your meals in your room. [Definitely]

MP3 players with headphones, loaded with favorite music, can soothe individuals who are disturbed by noises. Personal DVD players can also help make a long trip more enjoyable. [Absolutely, but we stagger them. It's easy to overdose. Music for a while, then books on tape/CD, then one movie a day.]

Don’t hesitate to explain the individual’s situation to others you may encounter, including flight attendants, hotel staff, employees at the amusements you visit, and other vacationers. ["Autism" is a good cover story for a lot of things.]

Prepare the individual before and during the trip on what to expect that day. [One of our kids needs a pretty detailed schedule, but he's surprisingly good about deviations. He just has to know the plan.]

Adhere as closely as you can to the individual’s normal routine. [Huh? The normal routine doesn't involve travel. Maybe they mean bedtime rituals?]

Whatever happens, stay calm. [When one parent gets stressed too much, they take a walk. It would be tough to do it solo.]

The perils of judgment

2009-07-05T19:16:00.006-05:00

Take one:

Two children, one dog, one weather beaten father. July day, maybe a bit hot. Lovely though.

One child shouts too much. The other seems old to be so cranky and tearful. Dad seems a bit passive. Really, he should put his foot down.

Parental grade: C-, and that's only because fathers get off easy.

Take two:

Two children with autism and a few more challenges besides. A day of bicycling (yes, and that was a great victory x 2) with Dad to a secret trail, rappelling down a bluff face to the river, playing with the dogs, tossing balls, drawing in the sand, exploring the river, drying sandy feet and managing wet underwear.

Constant negotiation, pushing the envelope of abilities and anxieties. The dog's pretty easy, but she gets upset if she can't see and touch all of her pack - especially when she's in her bike trailer.

Parental grade: Off the charts that neurotypical parents use.

Me, I don't judge nobody.

Tar Heel Reader - online picture book library

2009-07-02T22:52:00.013-05:00

Years ago I thought about starting a web site for friends and families to create short picture books for children with reading difficulties.

I never got very far, but, happily, the University of North Carolina went all the way (their reading center also sponsors the summer literacy program at Camp Courage Minnesota our son recently completed). I've read a few of these online picture books and they're really quite good.

Tar Heel Reader

... Welcome to the Tar Heel Reader, a collection of free, easy-to-read, and accessible books on a wide range of topics. Each book can be speech enabled and accessed using multiple interfaces (i.e. switches, alternative keyboards, touch screens, and dedicated AAC devices). The books may be downloaded as slide shows in PowerPoint, Impress, or Flash format.

You may write your own books using pictures from the huge collection at Flickr or pictures you upload....

... We have books that are intended for teenagers who are just learning to read. You may find some books that are inappropriate for your students; don’t use those. We recommend you learn about the Favorites page as a way to present your students with reading choices that you approve...

.... This site is a result of a collaboration between Center for Literacy and Disability Studies and the department of Computer Science at the University of North Carolina at Chapel Hill.

We'll see how well they work with our struggling reader.

I've asked them if they'll look into a version of the site optimized for an iPhone/iTouch.

Update: they have a blog, but as of 7/3/09 the feed doesn't work quite the way one would expect. Try this URL instead: http://tarheelreader.org/category/announcements/feed/. It worked for me.

Behavioral therapy for emotional disorders

2009-06-16T23:33:00.001-05:00

This NYT article was about behavioral therapy for so-called "borderline personality disorder", which could better be renamed "emotional disruption disorder" ...

Personal Health - An Emotional Hair Trigger, Often Misread - NYTimes.com

... Dialectical behavior therapy, a derivative of cognitive behavior therapy, helps patients identify thoughts, beliefs and assumptions that make their lives challenging and then learn different ways of thinking and reacting.

In effect, Dr. Linehan tells patients, “Your problem is that you don’t know how to regulate yourself, and I can teach you how.” She said thousands of therapists have been trained in dialectical behavior therapy, and many others practice it without special training...

I'm generally sympathetic to cognitive therapy approaches. I like the idea of teaching adults to recognize dysfunctional thoughts and assumptions and manage them directly.

I think all adults learn this as a part of getting wise and wizened, the trick is to teach it more quickly to people who have a harder time learning self-regulation.

Early intensive intervention in autism - what's the evidence?

2009-06-14T18:11:00.001-05:00

In the past six months I've been repeatedly reading about the immense value of intensive early intervention in the outcome of children with cognitive disorders and autism.

This surprised me. I follow the literature from a distance, and I don't remember a landmark study that defined the clinically significant (rather than statistically significant) benefits of intense early intervention. I especially don't remember a study describing the kind of early intervention.

I figured I'd missed something, so I did a quick review and found these studies ...

Turns out I missed .... nothing.

There's no significant new evidence, and damned little quality evidence of any kind to guide recommendations for early intervention of any kind by any party. The "conventional wisdom" about "intensive early intervention" appears to be more wishful thinking than evidence based.

This is damned frustrating. Intensive interventions strain financial and personal resources for society and families. In the absence of evidence we don't know how best to spend that money, time and energy -- on speech therapy, cognitive exercises, early education programs, adaptive sports, parental training, respite care, behavior modification programs, alternative communication strategies, cosmic ray therapy (ok, I made that one up) ...

Sigh.

Ok, now back to our regular programming.

Special needs and mobile phones: Why we're starting young

2009-06-14T11:52:00.012-05:00

In our community neurotypical children begin carrying mobile phones between the ages of 10 and 15. Many parents prefer to defer use of a mobile phone as long as possible.

How should cognitive disabilities and special needs affect the timing of first phone use?

Since cognitive disorders such as ADHD and autism may limit abilities to use a phone effectively or correctly, one approach would be to delay or defer use. Of course even a child with strong executive functions can lose a phone, so there are strong economic reasons to delay use.

We've chosen instead to move the use date forward, to the earliest time that a cognitively disabled child is likely to be able to follow basic phone rules.

I was mildly surprised by this. I thought we'd favor delay, but when we thought things through the reasons for moving sooner became quite strong.

We are starting out with a minimal cost phone and a simple pay-as-you-go T-Mobile plan. When the money is spent the phone stops working until we "refuel". For now we share a single number and phone, though if Google Voice ever goes live each child will get a lifelong GV number.

Our reasons to move now are:

The phone is a mild status symbol, a sign of "normality". For a cognitively disabled child status symbols of any kind are exquisitely rare. For us the middle school years loom grimly ahead.
Mobile phones are almost essential now. We can start training in the pre-adolescent/early adolescent years when we have more leverage.
Once our children are able to safely use a mobile phone, we'll be able to experiment with different social and independent settings. They will have more learning opportunities.
The phone will open some opportunities for "at a distance" social interactions; we want to see if this will provide options for our ASD kids.
Mobile phone skills are essential for many employment opportunities. Training early is an advantage.
At this time we can afford to replace a lost low end phone.
Location tracking is becoming common. This is valuable for all children, but especially valuable for children who are easily lost (many Asperger's children).
The future.

The last is a big reason. I've owned an iPhone for a year now. The opportunities to deliver cognitive aids, training materials, and support systems through these mobile- computers-that-you-can-by-the-way-talk-on is immense.

Just as computers opened (fitfully and erratically) new opportunities for blind persons, so too may these technologies allow the cognitively disabled to take on new life opportunities and employment. We want to explore these options and leverage what's available starting now. Some time in the next 1-3 years the child phone will be an iPhone-equivalent.

To improve the chances of return if it is lost we've replaced the "wallpaper" with a photograph of a handwritten plea to return the phone.

Lastly, this is taken from our current "phone poster" ...

Phone Rules 

1. Don’t dial 911 unless it’s a serious, real, emergency.
2. Only dial from the Names list.
3. Don’t call the Voice Mail number.
4. Keep the phone in your pocket when it’s not in use.
5. Remember your phone manners.
6. If you break the phone rules you lose your phone day (or days).
7. Only use the phone on your phone day.

Remember 

1. We know who you call.
2. Anyone you call gets your phone number.
3. It costs us money when you use the phone.
4. If you do well with the phone we’ll add other names to the number list. You will need to pay two stickers for each call.

iPhone 3GS - accessibility, vision, and speech

2009-06-08T18:46:00.001-05:00

The iPhone 3GS will be on sale June 19th. It's the first phone/mobile device I know of to market accessibility features. Since it has no physical keyboard, that's arguably overdue.

The accessibility feature set includes UI zoom, speech recognition (commands), screen reader and speech UI. The device also includes a 3 megapixel camera with broad light sensitivity and autofocus including macro focus. The iTouch 3GS, due out in the fall, will have similar features.

This suggests several applications for persons with disabilities:

Magnify text and other sources: This is trivial. The iPhone 3GS will be fun for macro microscopy, but it will also be a very practical text magnifier.
Read text: The iPhone 3GS has sufficient resolving power to turn text images to text, and it can read the results.

The iPhone 3GS is a very interesting platform for delivering solutions to persons with a range of sensory and cognitive disabilities.

Sundry notes from a meeting on special needs and the law

2009-05-19T22:06:00.005-05:00

Parents of special needs children may wish to initiate guardianship proceedings before a child turns 18. These are typically limited and are reviewed yearly by the courts. They can be reversed at any time.
Adults over 18 can pay rent to parents to live at home, this can reduce income that may count against social security/disability benefits.
A supplemental needs trust can own a home that a special needs adult lives in. (See also: 529 plan problems and special needs).
529 plan problems and special needs (important)
Relatives naming a special needs child or adult in a will should name their supplemental needs trust as the beneficiary.
Wills should be supplemented by a Letter of Intent that can guide ongoing care and support of a special needs adult or child after the death of their caregiver. This is not a legal document, it is typically a summary of their likes, dislikes, quirks, preferences, etc.

A grave problem with 529 plans and special needs children

2009-05-19T21:49:00.005-05:00

Many people fund 529 plans to support a child's post-secondary education or training.

Please consult your attorney before acting on anything here, but our understanding is that this is a problem for special needs children.

The trouble is that if a child has 529 assets in their name when they turn 18, the assets over $3000 mean they will not qualify for disability associated medical assistance until the assets are depleted.

Instead some advisors suggest the creation of a supplemental needs trust (not a special needs trust). These can shelter funds for a special needs adult so that disability and medical assistance support is not impacted.

The supplemental needs trust can also fund education. For example, one could purchase tax free municipal bonds in the trust. The fund trustee, usually a parent or family member, can then use the funds to pay for education or training.

Some employers will also allow certain high income employees to defer compensation. It may be possible to then shift the deferred compensation to the fund. This definitely requires attorney review!

If you already have a 529 plan assigned to a special needs child, it can be shifted to another family member before the child turns 18.

To repeat -- you should not act on anything in this post without consulting a very experienced financial consultant or attorney. For example, Wikipedia has conflicting statements on the topic.

Software services for cognitively disabled persons

2009-05-16T22:21:00.000-05:00

Sure, this is marketed for "elderly" users. The reality is that it's a solution for cognitively impaired persons, it's just that a lot of them are elderly.

Not all though. This approach is what we need for many young adults and adults with cognitive disabilities ...

Easier E-Mail for the Older Generation - The New Old Age Blog - NYTimes.com

... Mr. Hughes got together with his business partner, Ali Syed, to design an e-mail system that no senior could resist: no logins or links, no ad boxes or news flashes, no pokes or Twitters — only personal e-mail messages and photographs, with a caregiver making sure that everything is running smoothly.

They named it PawPawMail and created a Web site, pawpawmail.com. Anyone can use the software for $5 a month and run it on any virtually P.C. or Mac, including old clunkers gathering dust in the back of closets.

... What distinguishes PawPawMail from other programs is that it is a managed system aimed at caregivers as well as seniors. “PawPawMail is built entirely around the idea of two users,” Mr. Hughes said in a recent e-mail message. “The senior user who actually uses the e-mail account, and the caretaker/manager who helps set the senior up, gets his or her address book going, and screens mail from unknown sources to prevent contact from all the ridiculous number of scams that are directed at seniors...

This is something I've hoped to see for some time, and that I've often contemplated doing myself. I hope Mr. Hughes business grows well.

Camp Courage Minnesota: Teaching reading to persons with cognitive disorders

2009-05-15T18:55:00.004-05:00

I just came across this 2004 post (which I’d written, but forgotten) …

Gordon's Notes: Strategies for teaching reading to the cognitively disabled
… has a web site with lots of additional material...
Strategies for Teaching Reading to Students with Severe Disabilities
... Dr. Koppenhaver notes that, in his research … he and his colleagues found that the cognitive processes of learning to read for students with severe disabilities are almost identical to those of typically developing students. The only difference is in their ability to demonstrate skills through standard assessment measures.…
.. See also the UNC center for literacy and disability studies.

It reminds me to write about literacy programs for persons with cognitive disabilities.
Our son is enrolled this summer at Minnesota’s Courage Camps literacy camp from June 28 to July 3 (2007 description). It’s directed by Koppenhaver and his students …

… This unique session is for struggling readers (all disabilities), ages 12-18, who would like a positive literacy experience. Educators under the direction of Dr. David Koppenhaver and Dr. Karen Erickson, national literacy experts, will be working with campers to determine literacy needs and intervention strategies to begin to address those needs… Campers must be ambulatory and independent with self-care….

David Koppenhaver's web site is: http://faculty.rcoe.appstate.edu/koppenhaverd

Koppenhaver is one busy guy. My wife met with the camp director who’s also a paragon of productivity and energy.

We were concerned the camp would be a bit on the dull side, but the program is pretty appealing for an active teen. We don’t, however, underestimate the challenge of getting our 12 yo to go and stay there.

There really isn’t time for a large amount of reading practice, the core value is the individualized assessment and customized reading development program. The camp also trains local educators, several of whom will teach at Highland Jr High School where my son is going this September. At least one other MN Special Hockey athlete will attend.

Update 6/7/09: We visited the Courage Center Camp in May. It's an amazing facility. I hope to have pictures up and link to them. The camp has a twitter feed and a blogspot blog.

Update 6/26/09: The pictures are on a public Picasa web album.

Update 7/3/09: We're back from camp. The session costs us $800. I think the cost may be adjusted by income, but we're fortunate enough (really) to pay full freight. Our son had a very positive experience. It was his first extended time on his own, and he flew through it, largely taking care of himself. He did much better than we'd expected.

On the other hand, as a reading intervention it wasn't so hot. He tested out much worse than he has at school, which is very depressing. Was he fatigued? Not participating? Or is he truly unable to retain reading skills - or, even worse - are his cognitive abilities deteriorating? I hope it's the first two, but I do fear he rapidly loses reading abilities.

The test results, though tough to hear, are, obviously not a flaw of the program. I was disappointed, however, in how limited the recommendations and prescriptions were. I'm proud of myself for only presenting a glassy smile (ok, maybe a quick grimace) when we were urged to "read lots". (Honest, I didn't scream and I didn't rend my garments.)

We did get a useful referral to the Tar Heel Reader site, and we do know our money went to a good cause, so no regrets. I don't think we'll do it next year though. We need to come up with something different, and I think we'll have to do it ourselves.

Curious observations about cognitive capability

2009-04-29T00:23:00.000-05:00

Based on IQ testing I didn't think my son could successfully hide misuse of a web browser.

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.

Salon – autism is not a disorder

2009-04-26T22:34:00.001-05:00

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.

Combined video chat and remote assist for persons with disabilities

2009-04-25T18:15:00.001-05:00

This technique may work for a range of persons with varying cognitive and motor disabilities …

Gordon's Tech: Video Chat for elder parents over OS X: Google Video/Gmail, Google Notifier, Firefox and LogMeIn

… 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.