The Autism Diaries

Alternate version cross-posted at DK GreenRoots.

In Sayerville, NJ, the doors of the Center for Lifelong Learning recently opened. It's a school that can serve up to 175 students with autism and related disorders, providing education and training for many life skills which are taken for granted by neurotypicals.

Here's the kicker.

The facility, designed by USA Architects, is one of the first public school buildings in the state to be built according to Leadership in Energy and Environmental Design (LEED) standards, and could become the first to be certified LEED Platinum. This is due largely to its all-natural building materials and its use of green power.

About 94 percent of the materials used to build the facility are recyclable, and all the materials were purchased within a 500-mile radius, many of which were harvested specifically for the project, according to MRESC Superintendent Mark Finkelstein. There are also geothermal wells under the building that catch nearly 75 percent of the rainfall to be recycled and reused.

In terms of subject matter that personally drives me, environmental issues and autism are at the top of my list and I'm personally invested in each. Both fall squarely under the classification of crisis in virtually every sense of the word. If you are a regular visitor to this site, you probably need no convincing of the very real environmental crisis at hand. As for autism, latest figures show 1 in 91 to 1 in 100 American children ages 3-17 have been diagnosed with an autism spectrum disorder, the collective cost is $60 billion per year, the estimated collective cost ten years from now is $200 - $400 billion, and the current yearly cost for each directly affected family is $6,200.

This is why I am heartened by the school's dual-solution approach, which has the opportunity to be felt for multiple generations. It serves numerous school districts in and around Jersey's Middlesex County, providing standard educational fare along with life-skills that are commonly taken for granted. There is a nature trail, an aquatic center for water therapy, a greenhouse for vegetables and herbs and needed therapies on-site.

Meanwhile, another set of valuable lessons are built in, both literally and figuratively, as the center was recently named to the EPA's first ever Green Power Partnership list of top 20 green schools for K-12, noting 100% usage of green power.

“Our green powered schools are giving kids a brighter future in more ways than one. They’re leading the way in protecting our health and environment, and moving the country into the clean energy economy of the 21st century,” EPA Administrator Lisa P. Jackson said in a statement. “This is a great lesson on how we reduce harmful pollution in our skies and get America running on clean energy.”

That which a child is exposed to on a daily basis becomes their norm, for better or worse. This is an opportunity for the former.

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Some random yet notable autism stories....

Leaves of change: Blind, autistic woman rakes yards to help pay for dental work

(Heather) Stone, 33, is blind and autistic, and in recent weeks has used leaf raking as a way to earn enough money to go somewhere she absolutely despises: the dentist.

Stone hasn't seen a dentist in more than a decade. Twelve years ago, the last time she sat in a dentist's chair, a team of medical professionals physically restrained Stone in order to perform the necessary care, disregarding her cries for help when the numbing agent wasn't strong enough. Stone felt everything, and afterward, vowed never to return.

Since then, Stone has gone to great lengths to care for her teeth, brushing three times daily for exactly two minutes and swishing with anti-plaque and anti-cavity mouthwash for exactly a minute and 30 seconds each day. (She counts the length of time in her head.)

Still, today, Stone has nine cavities and five teeth that need pulling. The dental visit will require hospitalization - a visit that will cost $12,000.

That's a problem for someone who's poor and on Medicaid. Many dentists don't accept the government health insurance.

Autism Study Could Find Answers in Magic - Autistic People Lack Joint Attention Skills and Can't Be Fooled by Magicians' Tricks

Illusions are the stock and trade of magicians but researchers at the Barrow Neurological Institute in Phoenix, Ariz., want to know why people like Shore, who fall along the autism spectrum, are not so easily fooled.

Shore has lived his entire life with autism, a neurological disorder often marked by joint-attention deficits, or difficulty reading social signals; the same kind that a magician deliberately uses to throw attention away from the deception.

"Someone on the autism spectrum is looking exactly where the magician doesn't want him to look," Shore said.

Stephen Wiltshire Draws NYC

A 2006 study from the Harvard School of Public Health estimated the cumulative lifetime cost of caring for a person with autism to be $3.2 million, and $35 billion for the annual cost of care for all people with autism. These figures include direct and indirect associated medical costs, yet the author of the study believes that these figures may actually be an underestimation due to the difficulties in gathering accurate data for other out-of-pocket expenses, including alternative therapies.

Now throw this into the mix.

New research suggests that the average household with children with autism not only spends thousands of dollars toward educational, behavioral and health care expenses each year, but also suffers from a lesser-known cost that hits them up front – a sizeable chunk of missed household income, perhaps as much as $6,200 annually.

The study, published in April's edition of Pediatrics, paints a more detailed financial picture of how expensive life can become for parents of children with an autism spectrum disorder.

"To our knowledge, this is the first U.S. study that examines this front half of the 'money in, money out' equation," said economist Guillermo Montes, Ph.D., the study's lead author and a senior researcher at the Children's Institute, a not-for-profit organization affiliated with the University of Rochester, where he also serves as a faculty member in the division of General Pediatrics. "To collect data on expenses is fairly straightforward– it's a survey report. But projecting earning potential and then stacking that against actual income requires complex statistical modeling."

[...]

"We were able to forecast within $80 of what these households, on average, were actually earning," Montes said.

It's not exactly shocking that insurance companies would balk at covering treatments typically associated with autism spectrum disorders. Some of the most common treatments are Applied Behavior Analysis (ABA), Occupational Therapy, Sensory Integration Therapy (frequently part of the Occupational Therapy domain), Speech Therapy and Physical Therapy, though with such a broad range of individual needs, these can vary significantly.

ABA

Behavior Analysis is the scientific study of behavior. Applied Behavior Analysis (ABA) is the application of the principles of learning and motivation from Behavior Analysis, and the procedures and technology derived from those principles, to the solution of problems of social significance. Many decades of research have validated treatments based on ABA.

[...]

ABA is an objective discipline. ABA focuses on the reliable measurement and objective
evaluation of observable behavior.

Reliable measurement requires that behaviors are defined objectively. Vague terms such as anger, depression, aggression or tantrums are redefined in observable and quantifiable terms, so their frequency, duration or other measurable properties can be directly recorded (Sulzer-Azaroff & Mayer, 1991). For example, a goal to reduce a child’s aggressive behavior might define “aggression” as: “attempts, episodes or occurrences (each separated by 10 seconds) of biting, scratching, pinching or pulling hair.” “Initiating social interaction with peers” might be defined as: “looking at classmate and verbalizing an appropriate greeting.”

ABA interventions require a demonstration of the events that are responsible for the occurrence, or non-occurrence, of behavior. ABA uses methods of analysis that yield convincing, reproducible, and conceptually sensible demonstrations of how to accomplish specific behavior changes (Baer & Risley, 1987). Moreover, these behaviors are evaluated within relevant settings such as schools, homes and the community. The use of single case experimental design to evaluate the effectiveness of individualized interventions is an essential component of programs based upon ABA methodologies...

Occupational Therapy

Occupational Therapy can benefit a person with autism by attempting to improve the quality of life for the individual. The aim is to maintain, improve, or introduce skills that allow an individual to participate as independently as possible in meaningful life activities. Coping skills, fine motor skills, play skills, self help skills, and socialization are all targeted areas to be addressed.

Through occupational therapy methods, a person with autism can be aided both at home and within the school setting by teaching activities including dressing, feeding, toilet training, grooming, social skills, fine motor and visual skills that assist in writing and scissor use, gross motor coordination to help the individual ride a bike or walk properly, and visual perceptual skills needed for reading and writing.

Sensory Integration Therapy

One of the main difficulties autistic children face is how they perceive the environment. Oftentimes, their sensory impulses are contradictory to what is expected by society. Autistic children often have severe difficulty managing their sensory perceptions and a host of seemingly self-destructive behaviors or actions that are perceived to be senseless is the result. Autistic people sometimes cannot perceive their own physicality and must resort to these behaviors to “feel” something. For instance, some autistic children may bang their head against a wall or spin around in circles. Others have been known to self harm or crash into objects. These behaviors are the direct result of sensory integration impairment.

The process of sensory integration therapy seeks to mitigate these behaviors by teaching how to incorporate information gathered through the senses: smell, taste, touch, hearing, and vision, and combine these stimuli with what is already know to produce proper responses. As with levels of severity of autism, there are also different levels in which autistic children experience sensory integration dysfunction (SID). These levels range from mild to severe and can either manifest in a lack of sensitivity to the environment or a constant state of over-sensitivity.

Sensory integration therapy seeks to teach the nervous system how to process stimuli in a normalized fashion. A. Jean Ayers, Ph.D., was the first to research the process known as sensory integration therapy. She built the foundation of the therapy that has been instrumental in helping autistic children all over the world. Using a variety of sensory and motor exercises for the central nervous system it is actually possible to teach the brain how to accomplish this. Typically, an occupational therapist or physical therapist is the professional that practices sensory integration therapy.

Using various techniques it is possible to improve concentration, listening skills, physical balance, motor functioning, and impulse control in autistic children. While it is not successful in 100% of cases, sensory integration therapy has been shown to be a valuable tool for helping those with autism cope with their environment and lead a better, more adjusted life. Each autistic child has different symptoms and it is necessary to devise a plan for each individual when initiating sensory integration therapy.

Speech Therapy

What are the common speech and communication problems with autism?
Autism can affect speech, language development, and social communication in many ways.

Speech problems. A person with autism may:

• Not talk at all
• Utter grunts, cries, shrieks, or throaty, harsh sounds
• Hum or talk in a musical way
• Babble with word-like sounds
• Use foreign-sounding "words" or robotic-like speech
• Parrot or often repeat what another person says (called echolalia
• Use the right phrases and sentences, but with an unexpressive tone of voice

About one out of three people with autism has trouble producing speech sounds to effectively communicate with others. Their language is simply too hard to understand.

Communication problems. A person with autism may have one or more of these communication challenges:

• Trouble with conversational skills, which includes eye contact and gestures
• Trouble understanding the meaning of words outside the context where they were learned
• Memorization of things heard without knowing what's been said
• Reliance on echolalia as the main way to communicate
• Little understanding of the meaning of words or symbols
• Lack of creative language

Physical Therapy

Autism is a pervasive developmental disorder. This means that most people on the autism spectrum have delays, differences or disorders in many areas -- including gross and fine motor skills. Children on the spectrum may have low muscle tone, or have a tough time with coordination and sports. These issues can interfere with basic day-to-day functioning -- and they're almost certain to interfere with social and physical development.

[...]

Physical therapists may work with very young children on basic motor skills such as sitting, rolling, standing and playing. They may also work with parents to teach them some techniques for helping their child build muscle strength, coordination and skills.
As children grow older, physical therapists are more likely to come to a child's preschool or school. There, they may work on more sophisticated skills such as skipping, kicking, throwing and catching. These skills are not only important for physical development, but also for social engagement in sports, recess and general play.

In school settings, physical therapists may pull children out to work with them one-on-one, or "push in" to typical school settings such as gym class to support children in real-life situations. It's not unusual for a physical therapist to create groups including typical and autistic children to work on the social aspects of physical skills. Physical therapists may also work with special education teachers and aides, gym teachers and parents to provide tools for building social/physical skills.

Simply put, autism can be a financial hardship for many families, not even figuring the emotional toll into the equation, including an astronomical divorce rate among parents of autistic children, though that's a topic for a future diary.

So where does that put us in relation to the current lay of the land?

Does the term pre-existing condition mean ring a bell? In the health insurance industry it doesn't just ring bells, it sets off alarms. This is one of the reasons the Autism Society of America has thrown its weight fully behind President Obama.

What health-care reform can do, and what it means for the autism community, is illustrated most easily by the all-too real scenario of two families looking to buy health insurance for their children who are affected by autism. One family, whose son Mauricio, a 24-year-old young man with an autism diagnosis, diligently called several private insurance providers and asked for premium quotes for a policy, and each and every company explained that they will not sell a policy for someone who has an autism diagnosis. Another family, whose 7-year-old daughter, Angela, has a diagnosis of PDD-NOS, made the same calls to a number of insurance companies as well after Angela’s dad got a new job with a different company. They too were told the same old story—no coverage for Angela due to her “pre-existing condition,” autism.

“This is just not right,” said Jeff Sell, Autism Society Vice President of Advocacy and Public Policy. “Not only are these families being unfairly refused coverage for treatment of autism, but the companies are also refusing to sell coverage so these young people can see a doctor if they get strep throat, break a bone, develop a stomach ulcer, require intensive behavioral interventions or otherwise simply need access to prescribed medical care. In the future, with meaningful health-care reform, these families will be able to buy health coverage because insurance companies will no longer be able to exclude anyone just because that person has autism, or any other pre-existing condition.”

The White House has two Web sites to help explain the realities of health-care reform: http://www.healthreform.gov/ and www.whitehouse.gov/realitycheck. Both provide excellent background information and myth-busting. Further, Representative Henry Waxman (D-CA) has published a “line-by-line” review of claims and realities regarding HR 3200. That review can be found on his Web site. Many non-governmental organizations have also created Web sites and documents that help provide clarity on the debate. The independent, nonpartisan Web sites http://www.politifact.com/ and http://www.factcheck.org/ have investigated a number of claims and provide true-or-false evaluations of many current health-care reform proposals.

Here are the states that currently have autism insurance reform laws, or active bills, h/t to AutismVotes.org.

States with autism insurance reform laws
Arizona
Colorado
Connecticut
Florida
Illinois
Indiana
Louisiana
Montana
Nevada
New Jersey
New Mexico
Pennsylvania
South Carolina
Texas
Wisconsin

States with active autism insurance reform bills
Maine
Massachusetts
Michigan
New Hampshire
New York
Ohio

Anything short of 50 on this list is unacceptable and the strength of the laws vary from state to state.

You know a person with an autism spectrum disorder. Show them some love, support real healthcare reform.

Joshua Fry was first diagnosed with autism at the age of 3 and had taken prescribed psychotropic drugs for years. When he turned 18, the courts determined him unable to care for himself or enter into contracts on his own behalf, and his grandmother was granted limited conservatorship.

On Jan. 4, 2008, a Marine recruiter drove to a group home for the mentally disabled where Joshua Fry was living, and brought him to the recruiting station to enlist. Fry became one of the few, the proud, then spent a year locked up in the brig at Camp Pendleton.

Chapter 2-27, item p of the Physical Standards for Enlistment, Appointment, and Induction in the Armed Forces states the following (pdf):

"Current or history of other mental disorders...that in the opinion of the civilian or military provider will interfere with, or prevent satisfactory performance of military duty, are disqualifying."

Joshua Fry's introduction to the world epitomizes the darker corners of the American dream. Born to a crack addicted mother and heroin addicted father, he was a homeless baby of the Los Angeles streets for the first year of his life. After his parents were arrested for shoplifting, he was sent to live with his grandmother.

"He was like a wild animal," said Mary Beth Fry, his grandmother.

By the time he was 18, Fry had spent years on psychotropic drugs. He finished high school in a lock-down facility for troubled youth, where he also received treatment for an attraction to child pornography.

...

Nine days before he was approved for federal long-term disability, a Marine recruiter picked Fry up from a group home in Irvine and helped him enlist. Court papers allege the recruiter told him to lie about his mental problems. The recruiter has declined to speak with the reporters.

It did not take long for Fry's life to be turned upside down by the regimen of the Marine Corps. After two weeks of basic training, Fry told Corps officials that he had autism. They either didn't believe him or didn't care. He urinated in his canteen, returned to his old addiction of pornography, and finally, went AWOL.

Last week the 21-year-old Orange County resident pleaded guilty to fraudulent enlistment, possession of child pornography and unauthorized absences. He was sentenced to 4 years but released, last week, after spending almost a year in the brig at Camp Pendleton.

The Marine Corps is still investigating how the mentally troubled and developmentally challenged young man was recruited and how he made it through training.

With the military stretched thin, it's not difficult to imagine that some recruiters may have looked for creative ways to hit quotas.

But far from being a routine instance of a young man unable to adjust to military life, the Fry case has exposed an awkward issue for the Marines and other military services: Recruiters sometimes take ethical shortcuts to make their quotas at a time when Americans have tired of the nation's wars and finding recruits is difficult.

According to court documents, Fry's recruiter knew he was autistic. The Marine Corps is investigating the recruiter's conduct.

...

But Kevin McDermott, an Orange County lawyer who is familiar with Fry's case and has represented military clients who felt misled by their recruiters, said potential enlistees who would have been rejected a few years ago are now allowed to enlist, as recruiters struggle to fill their quotas.

"These recruiters are under enormous pressure," he said.

According to the Pentagon, there were 2,426 claims of recruiter misconduct in fiscal 2007, when 22,218 recruiters brought 319,229 recruits into the all-volunteer services. Of the claims, 593 were substantiated. The Marine Corps, with 43,562 recruits and 2,783 recruiters, had 211 claims of recruiter misconduct, with 118 substantiated. The Marines were the only service where more than half of claims were substantiated.

Last week, Fry's enlistment finally came to an end.

Pvt. Joshua Fry, who has been in the base brig since last year, received a three-year suspended sentence and bad conduct discharge after also pleading guilty to desertion and fraudulent enlistment.

...

Fry, who could have faced a 42-year prison term, could still go to jail for three years if he violates the terms of the plea agreement, which includes a requirement that he register as a sex offender. Fry had been in the brig since he was arrested last July, as authorities conducted the investigation and the plea agreement was worked out.

Autistic kids laugh differently

According to a recent paper entitled “Laughter Differs in Children with Autism: An Acoustic Analysis of Laughter Produced by Children with and without the Disorder,” children with autism exhibit only one type of laughter, compared to two types of laughter for nonautistic children.

“We revealed that children with autism produce very engaging laughs that we call ‘voiced’ laughs,” said William Hudenko, the lead author on the paper and assistant professor of psychology at Ithaca College.

To reach the conclusion, the study recorded laughter during a series of playful interactions with an examiner. The results showed that children with autism exhibited only one type of laughter, compared to two types of laughter for nonautistic children. There was no difference in laugh duration, frequency, change in or number of laughs per interaction.

“We hypothesized that children with autism may be expressing laughter primarily in response to positive internal states, rather than using laughter to negotiate social interactions,” said Hudenko.

At the Eating Disorders Unit at the Maudsley Hospital in London, anorexia is not seen as a social disorder — or even primarily a psychological one. While most American treatment providers blame perfection-seeking parents and the media's idealization of hollow-cheeked actresses for eating disorders (among other dysfunctional behaviors), researchers at Maudsley believe the root cause has little to do with social pressure. Rather, they think anorexia is better explained by heredity — perhaps by some of the same genes associated with autism.

The London researchers have been studying the commonalities between these two conditions for several years. On the surface, they appear entirely different — in autism, patients have difficulty connecting with people in the outside world, while in anorexia, sufferers seem consumed by other people's perceptions — but Maudsley researchers point out that the salient characteristics of each illness are similar.

For example, both anorexic and autistic patients have a tendency to behave obsessively and suffer from rigid ways of thinking. Tic disorders, which commonly affect people with autism, are found in 27% of people with severe anorexia. And in both conditions, patients have difficulty with "set-shifting," or changing course mentally.

"Both autism-spectrum conditions and anorexia share a narrow focus of attention, a resistance to change and excellent attention to detail," says Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University, who is not involved in the Maudsley research.

In addition, says Janet Treasure, director of the Maudsley Eating Disorders Unit, past research suggests that about 15% to 20% of patients with anorexia may also have Asperger's syndrome, an autism-spectrum disorder. Research also shows that the conditions occur together in families more often than they would by chance. It's possible, she says, that the same genetic predisposition for autism and anorexia may be expressed differently depending on gender.

The most commonly used test to measure intelligence is underestimating the intellectual potential of autistic people, new research suggests.

People with autism often struggle with the verbal portions of the Wechsler Adult Intelligence Scale, the test most often used to measure IQ, researchers said.

But when given another test of abstract reasoning abilities, the Raven's Standard Progressive Matrices, autistic people not only had scores equal to those of their non-autistic counterparts, but they answered the questions, on average, as much as 42 percent more quickly.

On the Raven's test, autistic participants scored, on average, 30 percentage points higher than would have been predicted by their scores on the Wechsler scale, according to the study, in the June issue of Human Brain Mapping.

Also, MRIs done during the testing showed that autistic people had more activity in different areas of their brains than those without autism.

As the quest to understand autism has grown more urgent, researchers have used brain scanners to peer into autistic minds, searched for faulty genes, and scrutinized the play of 1-year-olds.

The work has provided theories - but few concrete answers - about what goes awry to cause social isolation, repetitive behaviors, and communication problems that afflict an estimated one in 150 children with autism spectrum disorders. The hunt has focused on everything from "mirror neurons," brain cells some re searchers think enable people to understand other's actions and intentions, to an overgrowth of local connections in the brain.

Now a small but growing number of researchers see hope in a tool called transcranial magnetic stimulation, which lets scientists spark activity in specific areas of the brain and watch what happens to patients' behavior. The technology may illuminate some of the biology behind the disease, and some specialists speculate it may one day offer a treatment.

"There's a lot of mystery about autism - it's not as if there's a well-understood story of what's going on at all, and there's a huge variety of autism, too," said John Gabrieli, a neuroscientist at Massachusetts Institute of Technology. Transcranial magnetic stimulation "is fantastic for identifying brain regions that are essential for specific mental functions. . . . I think if we can start to use it more systematically with autism, one could hope we'd understand a lot more about what's going on."

Gabrieli said he hopes to team up with researchers at Beth Israel Deaconess Medical Center who are already getting preliminary results with the technology, finding that autistic brains appear to be more malleable than those of other people.

Public services for Virginians with autism suffer from poor organization and limited resources and fail to offer help early enough. Many school systems also are unable to meet the needs of their autistic students, according to a report released yesterday by the General Assembly's lead audit review agency.

The study, by the Joint Legislative Review Commission, assessed services for Virginians with autism spectrum disorders and also found that many parents of autistic children waited more than a year to seek help for their children after noticing possible symptoms.

"To date, there hasn't been a central agency in Virginia that has handled autism. Autism systems in Virginia tend not to be coordinated, which makes it difficult for parents and families to figure out how to get help," said Nathalie Molliet-Ribet, project leader for the study. "And many in the school system lack adequate training to fully meet the needs of children who might require extra help and assistance."

Functional Behavioral Assessment (FBA) and Positive Behavior Support (PBS) are game-changers for children with autism spectrum disorders (ASD) in the American school system.

FBA and PBS exist largely due to the pioneering work of Dr. Edward Carr. Last week, Dr. Carr and his wife were killed by an allegedly drunk driver.

Stony Brook University Mourns the Passing of Edward G. Carr, Ph.D., Leading Professor in the Department of Psychology

Revered by students and colleagues, and beloved by the children and families he worked with, Dr. Carr was an internationally recognized pioneer in autism treatment research. He was co-developer of two strategies for dealing with autism used by researchers and practitioners worldwide: “Functional Behavior Assessment,” and “Positive Behavior Support, strategies now recommended by the Individuals with Disabilities Education Act, federal legislation that specifies how all children with disabilities in the United States are to be educated.

Dr. Carr was the Director of the Research & Training Center on Positive Behavior Support for Autism & Developmental Disabilities at Stony Brook University. During his 35 years as a researcher and professor, he published more than 100 papers on issues related to applied behavior analysis and positive behavior support in the home, classroom, workplace, and community. Deeply engaged in community education and outreach, Dr. Carr trained many undergraduate and graduate students who have entered the autism field; he lectured extensively, served on the editorial boards of 17 journals, and gave workshops in the United States, Canada, and Europe. He is also the author of a best-selling book, “Communication-Based Intervention for Problem Behavior” (1994).

In 2005, Dr. Carr was named to the Panel of Professional Advisors of the Autism Society of America (ASA), a national association with 120,000 members dedicated to educating the public about autism. The panel helps set national standards for autism research, as well as practice and policy regarding the care of individuals with autism. He received numerous awards in his field including the Applied Research Award for Outstanding Contributions to Applied Behavioral Research (American Psychological Association, 2001) and the Distinguished Research Award for Career Achievement (Association for Retarded Citizens, 1999). A Fellow, American Psychological Association and past president of the Association for Positive Behavior Support, Dr. Carr was named in Who’s Who in America (2005) and Who’s Who in American Education (2004).

The FBA and PBA don't limit the school's potential responses to merely treating the symptom, it provides the opportunity to consider the cause as well as potential preventions that stand a greater chance of succeeding.

What is a Functional Behavioral Assessment (FBA)?

A functional behavioral assessment looks beyond the behavior itself. The focus when conducting a functional behavioral assessment is on identifying significant, pupil-specific social, affective, cognitive, and/or environmental factors associated with the occurrence (and non-occurrence) of specific behaviors. This broader perspective offers a better understanding of the function or purpose behind student behavior. Behavioral intervention plans based on an understanding of "why" a student misbehaves are extremely useful in addressing a wide range of problem behaviors.

What is Positive Behavior Support (PBS)?

Positive Behavior Support is an approach that schools and families can use to help a child experience success in school and at home. This approach believes that a full understanding of the child is needed for long-term behavior change. This includes determining the ways that the different settings affect behavior and understanding why the child engages in behavior that is both problematic and adaptive. Based on this information, a comprehensive plan can be developed that will change the environment to prevent problem behavior from occurring and teach the child better ways of getting his or her needs met in difficult situations. Plans focus on meaningful changes that will reduce problem behaviors over the long term provide the child with a better quality of life.

Thank you Dr. Carr, may you rest in peace.

Tell us something we don't already know...

Autistics are up to 40 percent faster at problem-solving than non-autistics, according to a new Université de Montréal and Harvard University study published in the journal Human Brain Mapping. As part of the investigation, participants were asked to complete patterns in the Raven's Standard Progressive Matrices (RSPM) – test that measures hypothesis-testing, problem-solving and learning skills.

"While both groups performed RSPM test with equal accuracy, the autistic group responded more quickly and appeared to use perceptual regions of the brain to accelerate problem-solving," says lead author Isabelle Soulières, a post-doctoral fellow at Harvard University who completed the experiment at the Université de Montréal. "Some critics agued that autistics would be unable to complete the RSPM because of its complexity, yet our study shows autistics complete it as efficiently and have a more highly developed perception than non-autistics."

Fifteen autistics and 18 non-autistics were recruited for the study. Participants were 14 to 36 years old and matched according to their preliminary results on the Wechsler Adult Intelligence Scale. All subjects underwent magnetic resonance imaging to explore their neural activity during RSPM problem-solving. While autism is a common neurodevelopmental disability characterized by profound differences in information processing and analysis, this study showed that autistics have efficient reasoning abilities that build on their perceptual strengths.

Coming soon: Bear in woods makes stunning revelation.

British hacker too ill for U.S. trial: lawyer

A British computer expert wanted by the United States for "the biggest military hack of all time" begins a final attempt on Tuesday to avoid extradition. Lawyers for Gary McKinnon, 43, will argue in London's High Court that he is too ill to be sent to the United States for trial because he has Asperger's syndrome, a form of autism. His defense team say he would be at risk of suicide or mental illness if he were extradited, the Press Association said. [...] McKinnon says he was searching for proof of alien life when he repeatedly broke into Pentagon and NASA networks from his home computer in London in 2001 and 2002.

Researchers are looking for 1,200 women who have a child with autism and who are pregnant with another child, as part of a large study of the disorder. The study is primarily funded by the National Institutes of Health along with money from Autism Speaks, an advocacy group. The project, known as Early Autism Risk Longitudinal Investigation or EARLI study, will follow women from pregnancy, and then monitor the babies until they are three years old. The study's goals are to identify early signs of autism and understand its possible causes. The Centers for Disease Control and Prevention estimates that one in 150 U.S. children have an autism spectrum disorder, which includes autism, Asperger's syndrome and pervasive developmental disorders. There is no known cure for autism, which is characterized by impairments in social interaction and communication, and unusual behavior and interests, but therapy and medication can improve symptoms. "By studying families who are already affected by autism, we feel we have the best chance at learning how genetics and environmental factors could work together to cause autism," said Craig Newschaffer, a department chair at the Drexel University School of Public Health in Philadelphia and the study's principal investigator.

As the quest to understand autism has grown more urgent, researchers have used brain scanners to peer into autistic minds, searched for faulty genes, and scrutinized the play of 1-year-olds. The work has provided theories - but few concrete answers - about what goes awry to cause social isolation, repetitive behaviors, and communication problems that afflict an estimated one in 150 children with autism spectrum disorders. The hunt has focused on everything from "mirror neurons," brain cells some re searchers think enable people to understand other's actions and intentions, to an overgrowth of local connections in the brain. Now a small but growing number of researchers see hope in a tool called transcranial magnetic stimulation, which lets scientists spark activity in specific areas of the brain and watch what happens to patients' behavior. The technology may illuminate some of the biology behind the disease, and some specialists speculate it may one day offer a treatment. "There's a lot of mystery about autism - it's not as if there's a well-understood story of what's going on at all, and there's a huge variety of autism, too," said John Gabrieli, a neuroscientist at Massachusetts Institute of Technology. Transcranial magnetic stimulation "is fantastic for identifying brain regions that are essential for specific mental functions. . . . I think if we can start to use it more systematically with autism, one could hope we'd understand a lot more about what's going on." Gabrieli said he hopes to team up with researchers at Beth Israel Deaconess Medical Center who are already getting preliminary results with the technology, finding that autistic brains appear to be more malleable than those of other people.

Public services for Virginians with autism suffer from poor organization and limited resources and fail to offer help early enough. Many school systems also are unable to meet the needs of their autistic students, according to a report released yesterday by the General Assembly’s lead audit review agency. The study, by the Joint Legislative Review Commission, assessed services for Virginians with autism spectrum disorders and also found that many parents of autistic children waited more than a year to seek help for their children after noticing possible symptoms. “To date, there hasn’t been a central agency in Virginia that has handled autism. Autism systems in Virginia tend not to be coordinated, which makes it difficult for parents and families to figure out how to get help,” said Nathalie Molliet-Ribet, project leader for the study. “And many in the school system lack adequate training to fully meet the needs of children who might require extra help and assistance.”

The hidden financial burdens of autism have been studied - data from a recent study by a University of Rochester-affiliated group suggest that household income per family with an autistic member is $6,200 per year lower on average - but some Latino families are feeling a hidden cultural burden of autism.

Six weeks ago, the Ortizes read in the local paper about a talk in Spanish for Latino parents of children with autism held at the library in downtown Framingham (MA).

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They were disappointed when they realized they were the only ones who attended the talk on April 5.

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Nearly 1.5 million Americans have ASD, but nobody knows how many are Latinos. Experts said that as the Latino population keeps growing, the condition may be more prevalent among them in years to come. Experts also said Latino children with autism tend to be diagnosed later than non-Hispanic children.

Advocates already report an increasing demand for information in Spanish about ASD, but if the language barrier can be overcome with Spanish pages in their Web sites and more Spanish-speaking workers, cultural barriers continue to be challenging.

"In other cultures, there is shame involved with special education needs and a stigma associated with autism, and some families are hesitant to ask for help," said Jennifer Repella, director of programs for the Maryland-based Autism Society of America. "It has to happen both ways. Organizations should be aware that the need is out there and provide information, but families need to act, call and ask for help."

Case stirs military recruiting questions: Austistic man in brig, facing court-martial

Pvt. Joshua D. Fry was diagnosed with autism at age 8. The complex brain-development disorder typically impairs a person's comprehension skills, inhibits communication and results in restricted and repetitive behavior. Genetics often play a major role, although the overall causes are unclear.

Fry graduated from the Marine Corps Recruit Depot in April 2008 even after telling commanders and medical personnel there about his autism, according to court documents.

Weeks later, during infantry training at Camp Pendleton, the Corps charged Fry with possession of child pornography and being absent without leave. Fry, 21, now sits in the base's brig.

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(Fry's attorney, Michael) Studenka said Fry lacks the mental capacity to sign an enlistment contract. He introduced a 2006 court order – a limited conservatorship – from an Orange County probate judge that found Fry to be “developmentally disabled” and “unable to provide for his ... personal needs for physical health, food, clothing or shelter.”

The order banned Fry from signing contracts or making most life decisions. Studenka tried to convince Ewers that the restriction applied to military contracts as well.

Celexa failed autism study; kids got side effects, HFR, US

An antidepressant that is among the most popular kinds of medicine used for treating autism didn't work for most kids and caused nightmares and other side effects, new research found.

Results showed risks with Celexa outweighed any benefits in the largest published study of medication versus dummy pills for autism. That's according to the lead author, Dr. Bryan King, director of child and adolescent psychiatry at Seattle Children's Hospital and the University of Washington medical school.

The drug is not approved for treating autism. However, many doctors have prescribed it, thinking it might help prevent repetitive behaviors such as spinning, twirling and head-banging that are hallmark autism symptoms. Similar antidepressants have been shown to help treat repetitive actions in people with obsessive-compulsive disorder.

But in the autism study, Celexa worked no better than dummy pills. In fact, compared with kids on placebo, those on Celexa were more than twice as likely to develop repetitive behaviors, as well as other side effects including sleep problems and hyperactivity.

Celexa is in a class of antidepressants known as selective serotonin reuptake inhibitors, or SSRIs, which are among the most widely used medicines given for autism.

Simon Baron-Cohen: Ali G's smarter cousin and Britain's leading expert on autism

...Twenty-five years ago, when Professor Simon Baron-Cohen first started working with autistic children, people used to routinely mishear him when he talked about his work, and assume that the children he was teaching were "artistic".

As a young graduate in human sciences, Baron-Cohen had a job in a small unit called Family Tree, which employed six dedicated teachers to educate its six demanding pupils. Baron-Cohen found the experience intense and fascinating, and ever since he has worked in the field of "autistic spectrum disorders" – which also includes autism's "high-functioning" cousin Asperger's syndrome – conducting many influential studies himself. Married with three children – and first cousin to the comedian Sacha Baron Cohen (who has somehow lost his hyphen) – he is presently head of Cambridge University's Autism Research Centre.

Ensconced in his small, cosy office in a 1930s block tucked away behind the ancient splendour of Trinity College, Cambridge, Baron-Cohen talks with quiet, measured passion about the trouble that imprecise talk about autism causes. "If the term is used too loosely," he explains, "it can lose its meaning as a medical diagnostic term. I think it should be reserved for people who are suffering, because that's when you get the diagnosis. When the features of autism are interfering with your life to such an extent that you're suffering, and you're seeking help and you take yourself off to a clinic and get a diagnosis, that's the only time when the term should be used.

Nevertheless, the idea that lots of people are wandering around unaware that they are on the autistic spectrum prevails. There are good reasons for this. Diagnosis is made far more frequently now than it was when Baron-Cohen first started out (Asperger's syndrome was virtually unheard of in Britain in the 1980s), and that is put mainly down to better detection. Yet some experts believe that autistic spectrum disorders, which affect about six in every thousand people, remain under-diagnosed. As for the overwhelming evidence that the disorder is more common in males, about which Baron-Cohen has written with intelligence and insight himself, even that is now being questioned, as further research suggests that girls are particularly vulnerable to failure of diagnosis.

Like most of those working in autism research and treatment, Baron-Cohen hopes for a breakthrough in the ability to diagnose autism using "biomarkers" (biological indicators of a particular condition) and closely follows developments, frequently reported, which may be moving towards achieving a genuine critical mass. However, it is unlikely that a "smoking gun" will ever be discovered.

Asperger syndrome doesn’t keep geology enthusiast from earning degree

Cole Kingsbury developed an early interest in all things related to rocks.

He remembers speaking to his principal before he, his mother and father were to move from Minnesota to Oregon before his second-grade year. He said he told the principal in Minnesota what he’d learned, prior to the move, about the Pacific Northwest: Mount St. Helens was a volcano, while Mount Hood used to be a volcano.

That early interest was still present after the family arrived.

“I was really awestruck with the topographic diversity of Oregon, as opposed to Minnesota, which is basically a pancake,” he said. “So my interest in geology was kindled (early).”

Last month, Kingsbury joined more than 500 classmates in Fairbanks earning their undergraduate degrees. A geology enthusiast — a self-described “geo-freak,” to be precise — he was one of a handful of graduates who had shaken some fairly unique challenges to earn it. Kingsbury lives with Asperger syndrome, a developmental disorder in the autism spectrum. It’s a disorder that, for the few who experience it — there were roughly a dozen students at the University of Alaska Fairbanks last year who identified themselves as living with degrees of autism or Asperger — makes the college-level leap to independence that much broader of a jump.

Can a harmless UFO obsessive stricken by autism be saved from 70 years in a brutal American jail?

The fate of self-confessed 'bumbling computer nerd' and UFO spotter Gary McKinnon - who faces extradition to the U.S. and a possible 70-year prison sentence after hacking into 97 military and Nasa computers - hangs in the balance.

In just a few days, this softly-spoken 43-year- old, who suffers from Asperger's Syndrome (a form of autism), will go to the High Court in London for a judicial review that might allow him to appeal again against his extradition.

This will be his last chance to stop the British Government sending him for trial in the U.S., where, if found guilty, he could spend what's left of his life in a maximum security jail in New Jersey.

McKinnon's crime was to hack into U.S. military computers in a naive attempt to unearth secrets about the existence of alien life.

Better, faster... and no office politics: the company with the autistic specialists

A pioneering company in Denmark is giving people with autism the chance to apply their skills to jobs from IT to product testing.  The result is a huge success that's about to be rolled out across Europe. Founder Thorkil Sonne tells Michael Booth how his workforce's superhuman recall and unflinching focus could teach the rest of us a thing or two.

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Thorkil Sonne and his wife already had two sons when their third, Lars, arrived in 1997, so they had plenty of experience of the behavioural quirks of growing youngsters. But as Lars entered kindergarten aged two-and-a-half, the couple began to notice a more troubling change. Lars wouldn’t play with the other children, preferring to sit alone for hours on end. He began to talk less and less, until he was virtually unable to engage in any kind of dialogue at all. Something was clearly very wrong.

“We were patient,” says Sonne. “Our older boys had taught us that each child has their pace at which they climb the ladder, but Lars seemed to be stuck on a step.” The Sonnes are Danes and, fortunately, the Danish education system is good at diagnosing childhood developmental problems. Unfortunately in Lars’s case, the diagnosis was childhood autism.

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Most parents, upon learning their child has a condition like this, will read up on it, learn about the treatments, therapies and consequences and start planning for the future. Sonne went somewhat further. He became involved with his local autistic society, ending up as vice-chairman of a housing facility for people with Asperger’s syndrome, a type of autism that affects social imagination, interaction and communication. Through the housing association, he got to know an 18-year-old Asperger’s sufferer who was especially gifted with computers. “He had retired on a state pension,” says Sonne. “But I thought that was so unfair as he had valuable IT skills that I could see would be useful for software- testing, support monitoring, programming and so on.”

So, in 2004, Sonne left his job of 15 years at the Danish communications company TDC, remortgaged his house, and founded a company, Specialisterne (The Specialists), to find employment for adults with autism and Asperger’s as software and systems testers. The 18-year-old Sonne had met through the housing association was his first employee.

Many autism cases 'undiagnosed'

A Cambridge University team looked at existing diagnoses - and carried out recognised tests to assess other children.

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The scientists first looked at cases of autism and Asperger syndrome among 8,824 children on the Special Educational Needs registers in 79 schools in East Anglia.

A total of 83 cases were reported, giving a prevalence of 94 in 10,000, or 1 in 106 children.

The team then sent a diagnosis survey to parents of 11,700 children in the area.

From 3,373 completed surveys, 41 cases of autism-spectrum conditions were reported, corresponding to prevalence of 1 in 101.

Adults with autism run Camarillo school for kids with autism

Preschool student teacher Ben Brock sat on a child-sized chair at a table and poured vinegar into a soda bottle containing baking soda, stones and a few other small objects. The four preschool-aged children sitting around the table watched, wide-eyed, as a raisin and a cork popped to the surface of the bottle and bubbled onto the table.

“Look, they’re dancing!” said Brock, 30.

The kids chirped in delight, except one little boy, who jumped and covered his ears.

Brock immediately understood the little boy’s reaction, because like him, Brock has a form of autism. He knows people with autism tend to have extremely acute hearing. The hiss of the chemical reaction when the vinegar penetrated the baking soda sounded loud to the boy.

“He’s like a thermometer among kids with autism,” said Felice Fausto, Brock’s sister and director of the family-owned school where Brock teaches — the Footprints Preschool and Family Resource Center in Camarillo.

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