Thursday, February 04, 2010

The sad story of the autism vaccination scam

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.

Tuesday, February 02, 2010

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

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 …

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….

Friday, January 29, 2010

Special needs computing - the iPad and the ChromeBook

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.

Saturday, January 23, 2010

Judo moves on an atypical mind: Plan iMac

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.

Saturday, January 02, 2010

Latest sticker chart innovation: discouraging sibling torments

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.

Friday, December 25, 2009

The end of autism

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:

Tuesday, December 22, 2009

TAGteach - dog training for special needs learners

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:

Wednesday, December 16, 2009

Brain changes related to intense remedial reading programs

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.

Sunday, December 13, 2009

Wealth and med choice: the antipsychotics

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.

Tuesday, December 01, 2009

Motivation and performance - two versions

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.