Gates Foundation Shared Learning Collaborative - a special education angle?

I came across the Shared Learning Collaborative (slcedu.org) while attending a conference in Silicon Valley. It's a Gates Foundation funded initiative to enhance American education by providing an open source framework for disseminating and evaluating educational interventions.

The conference was on analytics, so there the SLC representatives emphasized the process of gathering (anonymized) data on learners and interventions, with the goal of matching student traits to a large repository of traits and outcomes [2]. In the ideal world, the system provides a personalized education program. The vision reminded me of the training module in Neal Stephenson's The Diamond Age.

They're not thinking about special education, but of course when I hear "personalized learning strategies" the connection is painfully obvious. Whatever is developed for 'the bottom 10%' [1] is likely to overlap significantly with what our learners need. I'm particularly interested in lifelong learning and training for special education teens and adults; when you're fighting for every bit of freedom that's possible lifelong education takes on new meaning.

The SLC is in early startup phase. Normally I wouldn't track them at this point, but Gates Foundation money is a significant asset. I signed up to be notified of progress. The site doesn't mention this, but they have a twitter feed @slcedu.

-fn
[1] I suppose they could also be focusing on the top 10% who will work for Silicon Valley, but it's pretty clear that the Foundations interest is the bottom 30% of the student population -- the group that, as adults, will be shut out of the world economy. That group overlaps with our population.
[2] The same vision that has been a part of electronic health records since the 1970s.

Autism redefined - DSM 5 and the services dilemma

I've claimed frequently over the past six years that the diagnostic term "autism" is virtually meaningless. That doesn't mean this is entirely a good idea ...

New Definition of Autism May Exclude Many, Study Suggests - Benedict Carey - NYTimes.com

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests...

... The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply...

... Under the current criteria, a person can qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition, the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu...

Obviously, I agree with the DSM authors that the current definition of "autism" is not particularly useful. On the other hand, it's tied by law and legislation to a wide range of services and protections. So we need to be very careful about we replace it with. This is particularly important during our current era of slow economic growth, capture of that feeble growth by the most wealth Americans, and a rapidly aging population. There are ever more legitimate and powerful competitors for special needs funds; reclassification will be embraced as a big money saving opportunity.

To be sure, the fundamental problem is that "autism" gets special treatment over other brain disorders (ex: schizophrenia). There's no logical reason why this should be true, or why children in some school districts with "learning disabilities" get support while children with low IQ don't. That's why nobody has "mental retardation" any more; why assign a meaningless diagnosis when another equally meaningless diagnosis provides better services? For us doctors, that's a "no brainer".

We need to fix that problem, but it's not going to disappear. So any reclassification better have big returns. A new classification has to have a big impact on research, treatment, prognostic accuracy or management. This refactoring of the DSM classification doesn't promise much of anything -- except cost savings.

If there isn't a big impact, then we might as well flip the problem around, and redefine "autism" as "cognitive disability, cause unknown". That way we keep the legal protections and services associated with the word "autism", we expand those services to cover everyone who needs them, and we start with an intellectually honest classification that promises nothing and delivers nothing.

Then we start afresh - and begin to classify brain dysfunction based on pathophysiology and objective assessments.

See also:

• Very annoying: the diagnostic criteria for  are not all that useful 11/2005
• Autism turns into Asperger's - how did that happen? 5/2008
• Redefining mental retardation and autism - the revolution ahead 3/2006
• Psychiatric diagnoses: 200 years behind 11/2006
• Autism no more -- the end of a diagnosis 12/2006
• Autism: the label given to a wide and diverse variety of neurodevelopmental disorders 5/2007
• The end of autism 12/2009
• Rethinking neuropsychiatric diagnoses 9/2010
• Victory: The war against 20th century psychiatric diagnoses is all but won 12/2010
• The twilight of "schizophrenia" 4/2011

Advice for Aspies who hate to lose

#2 (aspie) says he hates competition.

That's not precisely true. He loves to win. The problem is, he hates to lose. He really hates to lose. [1]

Tonight that meant he was stressing big time about a spelling bee.

We talked it through. I suggested he turn the problem around. He's not competing to win, he's competing to get through the experience. He's competing with his own disability. Doesn't matter if he cries or not, just that he gets through it. One day, maybe, he'll learn to lose gracefully. Then he'll be able to compete.

He did well with that.

[1] This is a big contrast to #1 (autism, adhd, etc). #1 likes to win, but he doesn't mind losing. That's why he can be a baseball pitcher -- something I could never imagine doing. I was a lot more like #2.

 

Nature November 2011: Special issue on Autism, Mottron's view of the employed autistic and Calgary's Ability Hub

The Nov 2011 issue of Nature (v479, n7371, pp5-144) focuses on "The Autism Engima". It includes 3 reviews/news articles and 1 research article:

• Special issue on neuroscience: The autism enigma - introductory editorial
• The prevalence puzzle: Autism counts - a thorough 'news' review of the prevalence of autism. I came away with the impression that novel environmental changes might account for 0-20% of the increased diagnostic prevalence of autism, but that most of it is better diagnosis and reclassification. Studies of adults suggest that autism was far more common than most imagined -- these children were invisible.
• Scientists and autism: When geeks meet - autistic traits may be advantageous in some careers, but the hypothesis that assortative mating accounts for autism clusters doesn't sound too solid.
• Changing perceptions: The power of autism - this one is a research article, and is behind a closed-science paywall. Science Daily has a summary: Autistic people superior in multiple areas: Scientists must stop emphasizing autistics' shortcomings, expert urges.

I followed up on the Mottron article and came across an excellent National Post article ...

Autism’s advantages: Researcher says autistics need opportunities more than treatment | News | National Post

Because autism — characterized by repetitive behaviours, restricted interests and preoccupations and difficulties in basic social and communicative behaviours such as eye contact, intonation and facial expressions — is a lifelong disorder, parents can be caregivers for life. But as the population ages and parents get sick and die, there’s an even greater need to integrate people with autism into society by giving them the skills they need to become independent adults, experts say. Children tend to be the focus, autism organizations admit. Adults are overlooked.

“After 18 years of age they’re not kids anymore and they’re forgotten,” Dr. Mottron said over the phone this week from Lyon, France. “People have a cliché, that if he’s autistic you can do nothing with him. That’s not true. The fact that you have some terrible autistic life is not representative of autism in general.”

In his commentary, Dr. Mottron cites recent data, including an epidemiological study from Korea published this June that found the disorder is three and a half times more prevalent than common statistics suggest. “Among these 3.5%, about two-thirds have no adaptive problem at all,” he said, meaning they function relatively normally in society and should be able to take on a job.

... Ms. Dawson said it’s unfair to categorize someone as low functioning or high functioning. She and Dr. Mottron believe many tests that are used to determine level of functionality are inappropriate. Less commonly used tests such as Raven’s Matrices, which doesn’t require verbal instruction to complete, can actually reveal very high intelligence levels.

“To estimate the true rate, scientists should use only those tests that require no verbal explanation,” Dr. Mottron wrote in his paper. “If we were to measure the intelligence of a person with a hearing impairment, we wouldn’t hesitate to eliminate the components of the test that can’t be explained using sign language; why shouldn’t we do the same for autistics?”

Ms. Dawson said an entire session at this year’s International Meeting for Autism Research in San Diego focused entirely on finding out how to measure the intelligence of non-speaking autistics, who might be considered low-functioning....

... The founder of Specialisterne, a Danish company that has helped more than 170 autistics find work since 2004, said it’s OK to start such a movement with people who would be considered higher functioning.

“If we will be able to run a business on the skills of medium- or low-functioning, I’m not sure,” Thorkil Sonne said from Copenhagen. “But everyone deserves a chance to feel that they can produce something that others appreciate.”

... the Sinneave Family Foundation’s Ability Hub, a 17,000 square foot centre on the University of Calgary campus dedicated to helping people with autism gain life skills and work training...

... The Ability Hub opened in October and is just one of a few new centres devoted to getting autistic adults ready for the real world, said its executive director, Dr. Margaret Clarke, who has spent a career working with people who have autism — the Ability Centre is under construction in Whitby, Ont., and the Pacific Family Autism Centre to be built in Vancouver.

“Around the world we know that average lifetime cost to society to an individual with autism … is $3.4-million per individual. Three-quarters of those costs are incurred in adulthood largely around services to enable and facilitate individual vocations,” Dr. Clarke said, adding that some data suggests every dollar you invest in pre-vocational programming for people gives you a $7 return. “I actually think that number is going to be even better in the area of autism because individuals with autism have a great capability to learn, they’re just often held back by specific skill deficits or not given a chance.”

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

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

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)

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.

1. 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.
2. 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.
3. Wrote 1 page dossier on him for teachers to read. They don't get much information on students.
4. 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.
5. 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.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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!)
11. 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

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?

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

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.