Shaving and the autistic adolescent: gadgetry wins

My 15 yo is a hair guy. With a wedding to attend, he knew he needed to shave.

He didn't like the idea at all. He may have poor impulse control, but he knows he doesn't want sharp things near his face.

So I decided to go for something he'd like -- a shiny gadget. I turned to the Geek Consumer Report, Wirecutter, for the right gadget ...

The Best Electric Shaver | The Wirecutter

... The sweet spot of value in Panasonic's line is the ES8109S. It can be had for about $120, has nearly all the tricks the Braun does and then some, but it is not as good: It has a water-based cleaning system, offers a shave that is slightly less close, and it's noisier with a weaker design, to boot. The Panasonic blades hum at 13,000 RPM and it's wet/dry so you can use it in the shower (which you can't do with the Braun) and Panasonic claims to refine its blades with the same techniques that were used by sword makers in old Japan. It might be marketing, but it's pretty good marketing, built around a solid gadget. Consumer Reports gave it a 78/100, two points less than the Braun 7 series. But it's also ranked higher than a sibling Panasonic shaver costing $300, so you know you're getting a steal. And Amazon's users give it a 4.5 out of 5 star rating, averaged from 481 reviews...

It was $100 from Amazon. He was thrilled. Tore open the package, studied the complex cleaning ritual, and put it to work as soon as it charged. Did his face and decided to try his legs too (that will itch). His reward was to run the ultrasonic cleaning cycle (crazy gadgetry -- Panasonic's evil desire to tie a recurring revenue stream to the device).

Worked for us.

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

Some years ago I put assembled a Google custom search engine for special needs topics in Minnesota and particularly in the MSP region. I tried it out recently and was disappointed in the results.

Happily, I've learned a bit more about tuning these Google services and in a few minutes I had a new and improved version. If you have a special needs topic, and you live in Minnesota, you should give it a try: Google Custom Search - Special needs services in Minneapolis and St Paul.

Add a comment to this post if you find a problem or there's something you'd like to see added. There's an embedded version of this engine at the top right side of this blog.

Motivation and creativity: Adolescent special needs and crime

Number one proudly showed mother a bag of candies. The facility went to DEFCON 2 - on Mother's day morning. This was his way of confessing to a hot crime.

These are the mornings where we are reminded that, even in difficult economic times, society has ample housing for special needs adults. 

Not that he's doing all that badly. In mid-adolescence his behavior is much improved on years past, and quite a bit better than when he was three to five years old. Alas, the room for error is also much less; a 15 yo doesn't get the latitude of a 5 yo. It probably helps to register with the local police [1], but overall the stakes are higher. Of course.

So, DEFCON 2 it was. Fortunately, we're professionals. Mother calmly asked how he'd come across the candy on a Sunday morning bike ride. He had a ready answer. A construction crew friend gave it to him. Of course this would violate the no-accepting-gift rule, but it is true that he's gotten gear from the construction guys he "supervises" during the work season. Candy on Mother's Day Sunday though? Even he knew that wouldn't fly.

There were two places he could have picked 'em up from, and I hit the managers at both. One didn't carry the candy sample, but the other had jackpot. The good news is he'd paid for 'em, and the clerk remembered how much he pulled out. Stealing from my wallet is more of a learning opportunity than a crisis. Heck, a friend of mine did much worse as a kid and he's a judge now.

Still, there were bad things to rule out. Stealing from my wallet was a problem, but getting paid off by an adult would be far worse. We needed to know where the money came from. Fortunately we were set for the real third degree. The best way to corner a perp, after all, is start with the answers. 

Good cop, bad cop again. The method that works best is calm silence and some leading questions - "We know you know we know". Repeat back what he confesses, guiding him along. Take breaks when he stalls; let him spin out the alibis until they crack. Let him choose who to talk with.

That's where it got interesting. His second alibi was quite creative. It built on a friend's story and through in a bunch of persuasive detail. It only had two big fractures. One was that he got a trophy so big it wouldn't fit in our car -- so he left it at home. He forgot to claim that he'd won a cash prize, thus suggesting he'd stolen cash from the till. Lastly the event took place a week ago -- and there's no way he could hold onto cash that long.

Still, it was the best creative story he's ever told. I didn't know he had it in him. Even as the interrogation proceeded I took mental notes; now I could raise the bar for his creative school work.

Eventually he confessed. He put the remaining funds back in my desk drawer -- easier than handing it over to me. I said owed me $4, so we mowed the neighbors lawn and I called that even. The hardest thing for him was the idea that despite paying me back he didn't get to keep the candy. So I came up with a way for him to earn another $1.50 from his piggy bank and some work and we retrieved one candy box from the garbage.

A good days work overall. I'd already ordered a cash box, but I don't want to remove temptation entirely. Instead I'm going to put my wallet in the cash box, but leave $5 in my drawer. When the money goes, I'll know we have a learning opportunity. If he passes on $5, I'll move it to $10. 

Training.

[1] In our community the police like to know which teens are special needs. This won't make any difference under emergent circumstances, but if they're called for shoplifting or they pick a kid up it can.

Alternative housing for special needs adults - the MEDCottage

This was setup for elderly parents, but there are obvious implications for special needs adults (emphases mine)...

In the Backyard, Grandma's New Apartment - NYTimes.com:

.... a MEDCottage — a prefabricated 12-by-24-foot bedroom-bathroom-kitchenette unit that can be set up as a free-standing structure in their backyard. It’s more than a miniature house — it’s decked out with high-tech monitoring and safety features that rival those of many nursing homes....

... The Australians, who began building simple backyard homes for the elderly in the ’70s, call them granny flats. In the United States, these self-contained units have earned another nickname: granny pods...

... the Pages will become the first family in the country to take delivery of a high-tech MEDCottage. The cottage is laid out as an open-plan apartment with a kitchen area (equipped with a microwave, small refrigerator and washer-dryer combo), a bed area and a bathroom large enough in which to maneuver a wheelchair. The utilities and plumbing connect to the primary residence....

... The cameras sweep an area 12 inches above the floor, so normally all they transmit are images of feet and ankles...

... Currently about half of the states allow these accessory dwellings for a family member, according to Mr. Dupin. (Several additional states, including New York, are considering legislation explicitly permitting granny pods.)...

... The cottage costs about $85,000 new; Mr. Dupin’s distributors will buy it back for about $38,000 after 24 months of use...

... For caregivers in the tristate area who like the idea of aging in place, there’s another prefab alternative: P.A.L.S., short for Practical Assisted Living Structures.

... Attaching a portable pod didn’t cost much more than retrofitting his home, and the unit could be set up faster and with less mess. So last year he contacted Henry Racki, P.A.L.S. creator and a Connecticut home builder who also is a certified aging-in-place specialist... 

... Though each P.A.L.S. unit is customized to the client’s needs, the standard 20-by-14-foot bedroom and bathroom unit starts at about $67,000. Homeowners can also lease a unit. A five-year lease runs about $1,700 per month, after which you own the unit.
The pod comes with phone and TV cable lines built into the wall (no wires to trip on), a closet with levers that lower the clothes to wheelchair level, motion detectors that automatically turn the knee-high night-light system on, showers with grab bars and various types of no-step entries, wheelchair-accessible sinks and comfort-height toilets.

So far, Mr. Racki has set up 10 of these mini-homes in Connecticut, Massachusetts and New York. Zoning in Connecticut doesn’t usually allow for full kitchens, Mr. Racki said, but they can be included. He helps clients get all the permits and zoning approvals needed.
None of the P.A.L.S. purchasers so far have requested high-tech medical monitoring. But a system similar to the MEDCottage’s can be added for $16,000...

I didn't realize there was so much innovation in this area. Astonishing that similar devices have been use in Australia since the 1970s. There will be enormous pressure to find a way to care for demented elderly over the next 30 years; systems like this will be made legal in every state.

In my own case, when I'm demented I expect my daughter to build one on the side of a very steep cliff (which is what I personally would want).

For my son however, something like this may be needed for a longer term, presumably as a form of rental unit.

Prevent vulnerable person fraud: AT&T mobile parental controls purchase blocker

Scammers love the vulnerable population. Elders of course, but also special needs. This month AT&T and BuneUS (Mblox) teamed up to put a $10/month charge on our mobile. I suspect my son responded to a text spam on his phone and thereby 'signed' a contract.

AT&T will reverse the charges -- but more importantly you can put a "purchase block" on all phones. It's a form of parental control. I put it on my phone too -- I want it for me as well as my son. It blocks everything -- so no accidental ring tone charges. Details here: Gordon's Notes: Crammed: Mblox $9.99 a month.

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...