Autism spectrum disorders on the phone: would a webcam or mirror help?

I wonder if this technique would be helpful for people with autism spectrum disorders. Would seeing their own facial expressions help with self-evaluation and self-assessment?

Gordon is using a webcam, but a mirror would also work...

Gordon's Notes: using a webcam to help with audio-only conference calls

... I've recently been persuaded that for many people, including me, even crummy low resolution images enable better social interaction and higher quality communication.

So I've started using a webcam with Office Communicator 2005. Unfortunately the people I communicate with don't usually have a webcam, so it's one way. They see me. I either see a blank space or my own face.

That's where I made an interesting discovery. It helps me, when on a phone call, to see my own face. It helps me be more patient, and even to be a better listener....

So I'm experimenting with viewing my own face and body language when I'm on voice only calls. I'm guessing it will help me be more conscious of my own reactions, and better able to manage the call....

Autism Society of Minnesota: Recommendations, PCA infrormation

We've been taking "Sam" to the Eagle's Nest social skills program at the Autism Society of Minnesota. I think it's somewhat helpful for him [1], though it's designed more for children like Sam's brother "Nick". Nick is up next, though that will take a carefully coercive mixture of bribes and consequences.

The real value for us though has been the parents session led by an expert counselor with serious personal experience with "the spectrum". The "AuSM" also has q1-2 week skillshop topics and an excellent member's only Lending Library (click to browse collection): "Library materials are available for loan to all current AuSM members. You may check out up to 6 items for 3 weeks at a time."

In particular we've been learning more about schools (Junior High looms in 1.3 years), SSI, and PCA services.

Form what we've learned and seen there's no simple Junior High answer for "Sam". We have, however, learned of arrangements that will work for "Nick", such as leaving classes 2-3 minutes early to avoid the hallway pandemonium. For "Sam" we need something more like Lionsgate, which is massively oversubscribed even before it's operational. We're thinking hard.

Beyond High School are programs like Minnesota Life College (private, $$), school district "transition services", and SSI (social security disability).

The SSI bit is important for all children with developmental disabilities. Most will need to apply for SSI disability on their 18th birthday (if not earlier). Apparently if one waits too long to apply for SSI some "window" for developmental SSI closes, and one is eligible only the American's ridiculously small standard SSI ($370/month - enough for heat maybe).

Which brings me back to the PCA (personal care attendant) topic. The AuSM has an excellent handout called Services for Children with ASD (scan PDF 103K) I'll summarize here and expand upon:

• TEFRA: medical assistance, but qualification based on disability. If a child is on Medical Assistance (ex: foster adoption) or qualifies for SSI (disability) they don't need TEFRA. TEFRA has a family fee. TEFRA will help pay for PCA Services and Waivered services.
• PCA services (see esp MN PCA Choice Option). If two children in a family qualify an incremental amount is available above the usual family rate. (See also my PCA comments, below.)
  
• Waivered services (see MR/RC (mental retardation) waiver and CADI waiver). The CDSC waiver option (consumer-directed community supports) "parents of minors may be paid for daily care tasks." This has a special appeal for us (below).

The CDSC waiver option is where we want to go. We've had PCA services for "Sam" for years (see also: PCA things I wish I'd known), but have never applied for services for "Nick" -- though he would probably qualify. Over this time we've followed the conventional route of engaging an agency who takes a substantial cut of the stipend and is supposed to do background checks, training, hiring, etc. This hasn't always worked out well, and with the departure of our latest PCA we're resolved to do something differently.

Our special challenge is that Sam makes everyday high functioning autism look simple by comparison. We need a PCA with vast patience, creativity, affection, empathy, physical durability, training athletic capacity, maturity, reliability, and knowledge of swimming, golf, fishing, paddling, horseback riding, bicycling, inline skating, hockey, ice skating, skiing/snowboarding, and baseball (latter at a high school level). Experience with autism, ADD, EBD, ODD, and anxiety disorder a plus. Must be willing to work for very little money on weekends and nights.

I think the problem is clear. Sam needs his parents to manage him -- nobody else can do that.

So, what we need is an extra set of hands, with a secondary focus on helping Sam's sibs, including a neurotypical child. A nanny with a bit of special needs experience, or just empathy and wisdom, would do very well. If we could get a CDSC waiver we'd be able to the money paid "us" to buy services for the entire family -- freeing up time and energy to keep all the balls in the air.

So that's our latest project. As we push that along we've also learned of two recommended PCA agencies for waivers and other variations and a woman who works as a "Flexible Case Manager" (a role that may be related to the waiver programs.)

• LifeWorks customized support services: "A shift in funding in Minnesota in 1999 gives people with disabilities and their families more control over the services they receive. Lifeworks’ Customized Support Services (CSS) offers the Agency with Choice and Fiscal Support Entity services required for families to access these waivered funds. This allows children to continue to live at home, gives families the freedom to live a more normal life, and saves money for Minnesota taxpayers." I'm told a typical cost might be $175/month for their services.
• St. David's Child Development and Family Services (Minneotonka): "St. David’s offers an additional service option that individuals or families can choose under the PCA program model called PCA Choice. For this service option, the client or family is responsible for interviewing, hiring, training and supervising any staff. The individual or client enters into a written agreement with St. David’s for billing and payroll services."

[1] Sam almost does very well in these settings. It's unstructured settings where the challenges come out.

Berate, Guggenheim and ABC: three slimy entities

There's no good reason today to believe that autism spectrum disorders are related to immunization.

Science in general, and clinical science in particular, is very imperfect. Even so, it's all we've got. There are no credible competitors to science for guiding health care and health related decisions.

The answer from the best science we've got is that there's no connection. The strong beliefs of many people has meant that the topic has been very well studied -- probably to the detriment of more promising investigations. Today what was once a plausible hypothesis has become a waste of time and resources. We have better things to do now.

Maybe that situation will change, but today that's what it is.

So, like all scientists and most clinicians, I was very annoyed when I heard about a television show promoting an autism/immunization link. Still, that's what one gets from television. There's a reason I don't watch it.

What took me from annoyance to blogging, however, was this quote from the creators of the TV show:

ABC defends show against outcry by pediatricians: Scientific American:

....ABC said it plans to broadcast the episode without changes, but would run a disclaimer at the opening of the show stating the story is fictional. A message at the end will refer viewers to a CDC Web site for information about autism.

The show's two creators, Greg Berate and Marc Guggenheim, disputed the notion that their show would frighten parents away from vaccines.

'We actually share the concern of the American Academy of Pediatrics. We believe that children should be vaccinated,' Berate told Reuters. But he also said, 'We hope that people do watch the episode and draw their own conclusions.'...

That's slimy. If they really believe that immunizations lead to autism, they should have the courage to say so. If they believe otherwise, then they're cynical slimeballs to have created the show. "Disputing" the notion that the show discourages immunization makes my head explode.

Whatever the explanation, whether they're believers or not, they are definitely slimy -- and so is their network.

I'd boycott ABC, but I already mentioned I don't watch television. Maybe I should watch NBC so I can say I'm boycotting ABC, but that's too terrible to consider.

Garrison Keillor on education, ideology and learning to read

As of today I've written about 45 posts reading and cognitive disabilities. Since my wife and I are basically bleeding-heart liberals (for want of a better term), it's particularly sad that the liberal establishment has often been opposed to evidence-based education in reading. Even today, there's a strong remnant of 1960s era approaches to teaching reading in Minnesota's educational establishment.

Today, a local celebrity and certified liberal, Garrison Keillor, writes on the topic as only he can:

We're failing our kids | Salon.com

... And then there is the grief that old righteous people inflict on the young, such as our public schools. I'm looking at U.S. Department of Education statistics on reading achievement and see that here in Minnesota -- proud, progressive Minnesota -- on a 500-point test (average score: 225), 27 percent of fourth-graders score below basic proficiency, and black and Hispanic kids score 30-some points lower than white on average, and the 30 percent of public schoolkids who come from households in poverty (who qualify for reduced-price school lunches) score 27 points lower than those who don't come from poverty.

Reading is the key to everything. Teaching children to read is a fundamental moral obligation of the society. That 27 percent are at serious risk of crippling illiteracy is an outrageous scandal.

This is a bleak picture for an old Democrat. Face it, the schools are not run by Republican oligarchs in top hats and spats but by perfectly nice, caring, sharing people, with a smattering of yoga/raga/tofu/mojo/mantra folks like my old confreres. Nice people are failing these kids, but when they are called on it, they get very huffy. When the grand poobah Ph.D.s of education stand up and blow, they speak with great confidence about theories of teaching, and considering the test results, the bums ought to be thrown out.

There is much evidence that teaching phonics really works, especially with kids with learning disabilities, a growing constituency. But because phonics is associated with behaviorism and with conservatives, and because the Current Occupant has spoken on the subject, my fellow liberals are opposed.

Liberal dogma says that each child is inherently gifted and will read if only he is read to. This was true of my grandson; it is demonstrably not true of many kids, including my sandy-haired, gap-toothed daughter. The No Child Left Behind initiative has plenty of flaws, but the Democrats who are trashing it should take another look at the Reading First program. It is morally disgusting if Democrats throw out Republican programs that are good for children. Life is not a scrimmage. Grown-ups who stick with dogma even though it condemns children to second-class lives should be put on buses and sent to North Dakota to hoe wheat for a year.

St. Michael, I beg you to send angels to watch over fourth-graders who are struggling to read, because the righteous among us are not doing the job.

For more on this topic see:

• Be the Best You can Be Helping Struggling Readers Explicit phonics instruction
• Be the Best You can Be NICHD (NIH) director lecture on helping children to read (1999)
• Be the Best You can Be Florida school district tries to sort out commercial reading intervention
• Be the Best You can Be Teaching Reading Scientific American March 2002
• Be the Best You can Be Another study on the superiority of phonics
• Be the Best You can Be Overview of trends in reading -- the phonics renaissance
• Be the Best You can Be Teaching reading to special needs children The Parental contribution
• Be the Best You can Be Teaching reading to autistic children whole word approach (for a contrary perspective)
• Be the Best You can Be Teaching reading to autistic children a limited literature
• Be the Best You can Be The curse of special needs reading BORING books

Reading goes to the dogs

The Strib writes about reading to dogs in the Ramsey county library system:

Libraries pair furry friends with phonics: "The Ramsey County library system introduced the Paws to Read program last summer, when therapy dog owners approached library administrators about volunteering. So far, the library system has hosted programs in Roseville, Shoreview, Maplewood and now Mounds View."

Saint Paul's been running the same program for at least six months. We've been regulars at two libraries. I can't say that it makes a great difference for our children, but they do like it.

A mouse model for schizophrenia

This was announced in July of 2007, but I completely missed it. I only read of it in a recent 'top 10 science stories' article.

Hopkins team develops first mouse model of schizophrenia

Johns Hopkins researchers have genetically engineered the first mouse that models both the anatomical and behavioral defects of schizophrenia, a complex and debilitating brain disorder that affects over 2 million Americans.

In contrast to current animal studies that rely on drugs that can only mimic the manifestations of schizophrenia, such as delusions, mood changes and paranoia, this new mouse is based on a genetic change relevant to the disease. Thus, this mouse should greatly help with understanding disease progression and developing new therapies.

Animal models of schizophrenia have been hard to design since many different causes underlie this disease. However, Akira Sawa, M.D., Ph.D., associate professor of psychiatry and neuroscience and director of the program in molecular psychiatry and his colleagues took advantage of the recent discovery of a major risk factor for this disease: the DISC1 gene (short for disrupted in schizophrenia), which makes a protein that helps nerve cells assume their proper positions in the brain.

As reported online this week in Proceedings of the National Academy of Sciences, the researchers generated mice that make an incomplete, shortened form of the DISC1 protein in addition to the regular type. The short form of the protein attaches to the full-length one, disrupting its normal duties.

As these mice matured, they became more agitated when placed in an open field, had trouble finding hidden food, and did not swim as long as regular mice; such behaviors parallel the hyperactivity, smell defects and apathy observed in schizophrenia patients. Magnetic resonance imaging (MRI), taken in collaboration with Susumu Mori, Ph.D., professor of radiology, also revealed characteristic defects in brain structure, including enlarged lateral ventricles, a region that circulates the spinal fluid and helps protect against physical trauma.

Sawa notes that the defects in these mice were not as severe as those typically seen in people with schizophrenia, because more than one gene is required to trigger the clinical disease. “However, this mouse model will help us fill many gaps in schizophrenia research,” he says. “We can use them to explore how external factors like stress or viruses may worsen symptoms. The animals can also be bred with other strains of genetically engineered mice to try to pinpoint additional schizophrenia genes.”

Mouse models for human disorders of the mind are hugely important. In 2006 I wished for a murine autism model (twice, actually) and in 2007 there were hints of some models (MECP2 based). I didn't realize that a DISC1 model also existed for schizophrenia.

Of course as I always mention, autism and schizophrenia are fuzzy labels we apply to what's likely to turn out to be many diverse neurologic disorders.

A mouse model is to thought disorders as the telescope was to learning about the universe. It's progress we can celebrate.

Treating impulsive aggression: HUGE placebo effect is better than Risperdal

Impulsive and irritable aggression is a big issue in low IQ adults and children. Risperdal, in particular, has been heavily prescribed for this problem over the past ten years.

One study in adults suggests it doesn't really work; but note that it's approved in the US for children with autism -- it wasn't studied in that group. (The journalists language, btw, implies it's often used for mere ADHD alone; that's not true.)

The amazing part of this study, was the placebo effect.

Drugs Offer No Benefit in Curbing Aggression, Study Finds - New York Times

The drugs most widely used to manage aggressive outbursts in intellectually disabled people are no more effective than placebos for most patients and may be less so, researchers report....

In recent years, many doctors have begun to use the so-called antipsychotic drugs, which were developed to treat schizophrenia, as all-purpose tranquilizers to settle threatening behavior — in children with attention-deficit problems, college students with depression, older people with Alzheimer’s disease and intellectually handicapped people...

The new study tracked 86 adults with low I.Q.’s in community housing in England, Wales and Australia over more than a month of treatment. It found a 79 percent reduction in aggressive behavior among those taking dummy pills, compared with a reduction of 65 percent or less in those taking antipsychotic drugs.

The researchers focused on two drugs, Risperdal by Janssen, and an older drug, Haldol, but said the findings almost certainly applied to all similar medications. Such drugs account for more than $10 billion in annual sales, and research suggests that at least half of all prescriptions are for unapproved “off label” uses — often to treat aggression or irritation...

... Previous studies of the drugs’ effect on aggressive outbursts have been mixed, with some showing little benefit and others a strong calming influence. But the drugs have serious side effects, including rapid weight gain and tremors, and doctors have had little rigorous evidence to guide practice.

... Janssen, a Johnson & Johnson subsidiary, said that Risperdal only promotes approved uses, which in this country include the treatment of irritability associated with autism in children.

In the study, Dr. Peter J. Tyrer, a professor of psychiatry at Imperial College London, led a research team who assigned 86 people from ages 18 to 65 to one of three groups: one that received Risperdal; one that received another antipsychotic, the generic form of Haldol; and one that was given a placebo pill. Caregivers tracked the participants’ behavior. Many people with very low I.Q.’s are quick to anger and lash out at others, bang their heads or fists into the wall in frustration, or singe the air with obscenities when annoyed.

After a month, people in all three groups had settled down, losing their temper less often and causing less damage when they did. Yet unexpectedly, those in the placebo group improved the most, significantly more so than those on medication....

Holy cow. That's one hell of a placebo effect.

A typical placebo effect should have been around 30% improvement. In that case Risperdal would be looking great today.

In this group the placebo effect is MUCH larger than expected.

If this is born out in f/u studies, we need to figure out how to leverage that. Why was the placebo effect so large? Was it due to a change how peers and caregivers treated the study participants? A synergistic effect between the study participants expectations and behaviors and those of his (most are male) caregivers?

There are two interesting results in this study, but if we can harness that placebo effect then the net result is actually very positive for special needs adults. We don't know if children would have such a huge placebo response, so the study needs to be repeated in children.

OS X: automated spoken summary of email messages

This post is about using OS X's built-in summary and speech functions for persons with limited vision, but it's probably broadly useful to anyone with language challenges.

Gordon's Tech: Email Summary and speech

.... My mother's vision is failing. This is something she could use, though I've already programme done key to active the built-in generic reading engine. Too bad Mail.app doesn't let me attach a script to a nice fat icon, but I might create a rule that would routinely read each message she opens. (Rules are hidden away in mail preferences -- which is not a logical place for that function.)"

Tips for academic organization

Giving Disorganized Boys the Tools for Success - New York Times doesn't have any major new advice, but it describes typical organizational measures that should probably be started in grade school.

Autism society of Minnesota: camp experiences

We received this notice from the ASM listserv. I've edited the note slightly. Summer camp attendance is a prerequisite for the winter program.

The Autism Society of Minnesota Camp Hand in Hand Winter weekender

... A Camp Hand in Hand Winter Retreat for Youth 9 – 18 on the Autism Spectrum
A few spots are still left! Register by Monday, December 17!

January 19 – 21, 2008
Camp Friendship
Annandale, MN

Take part in a wide variety of fun, structured indoor and outdoor seasonal activities during this 3-day winter holiday during Martin Luther King, Jr. weekend. Campers will stay at the beautiful 115-acre Camp Friendship located on the shores of Clearwater Lake near Annandale, MN. Facilities include modern cabins and a lodge with a canteen and game room. Specially trained Camp Friendship staff will lead activities.

Campers will be supported by AuSM-trained staff at a 2:1 camper to staff ratio. A licensed and experienced nurse will provide 24-hour medical care.

Activities include:

Cross country skiing
Snowshoeing
Ice fishing
Sledding
Broomball
Arts and crafts
Music
Gym games
Climbing wall

This camp is appropriate for children who attend Camp Hand in Hand during
the summer. If you are unsure if it is right for your child, please visit
our website and read the descriptions of Camp Hand in Hand and Camp
Discovery. We are also happy to answer your questions.

Registration
Camp fee is $330.00

A $100.00 non-refundable deposit is due with registration. Final payment is due January 10, 2008. Registration deadline is December 17, 2007. Space is
limited. Camper spots will be filled on a first come, first served basis. You must be a member of AuSM to register.