Autistic Conjecture of the Day

Autism is not the problem. Other people are the problem.

2008-08-22T10:16:00.000-07:00

This article resonates with me. Yes, it is the attitude of the public at large, towards our friends with differing abilities, that creates the largest of problems. As with all kids, a loving, supportive attitude goes a long ways towards moving forward and reaching goals.

AUTISTIC CONJECTURE OF THE DAY
"Your Attitude Just Might Be My Biggest Barrier"
Contributed by Kim Davis

Source:
Dan Wilkins, Nth Degree 1991

Behaviors always happen for a reason. The reasons may or may not be obvious to us. They do not simply "just happen" but may be a function of a situation, a communication partner, the message that is being sent, or even a physiological need. Every human being uses behavior to communicate. Consider the facial expressions that let you know if a conversational partner is interested or not, the slammed door that expresses a frustration or anger better than any words could have, or the shove out of the way when someone wants to be left alone. Even though most of us can speak and have the ability to understand and solve problems, we often rely heavily on behaviors to express our feelings. Many of the individuals with autism spectrum disorders that we support may have limited or no speech to access when they want to communicate messages such as they don't understand, want to be left alone, or are having a rough time. Instead, they "act out" as a way of telling us.

Individuals who have autism spectrum disorders or other disabilities are faced with many challenges. One of the challenges they may face are attitudes and misconceptions regarding their behaviors. Often behaviors are looked at as something to be fixed or eliminated rather than a method for expressing feelings or desires. In order to bridge that gap, the first concept to grasp is that behavior is communication and that communication is behavior. It is impossible for anyone to "not communicate." Every human uses behavior to communicate at one time or another. This concept is central to our understanding of how "unacceptable" or "unwanted" behaviors develop and how they function in the communicative repertoire of some individuals. However, before looking at specific behaviors, there is yet another very important concept to understand. This is the concept of labels and how they are perceived. As Herb Lovett (1996) stated in Learning to Listen, "I do not like the idea of people (with disabilities) being identified in ways that are dismissive and rude. We have also taken people's behavior out of their social and personal contexts by labeling them as well. The ways we label behavior simply extend the ways we have been trained to label people." It is true that we use "labels" to name behaviors but unfortunately labels cause us to miss the message the behavior may be communicating.

Parents, teachers and other support staff may dismiss the message of the behavior by saying, "Oh, they're just doing that for attention." In many instances, the term "attention seeking" has become a way of "devaluing the needs of people and not taking them seriously" (Lovett, 1996). There are many questions to ask regarding "attention seeking" such as: Why might someone be seeking attention? Is seeking attention always a bad idea? Most often it is true that, when behavior is identified as attention seeking, the next step is to ignore the person and their behavior. Perhaps it would be a better option to consider why attention is desired. Is the only time the individual receives any "meaningful" conversation and attention after they have done something which resembles "misbehavior?" Could the individual be hurt, frightened, or frustrated and wanting to tell someone? Could the individual be lonely and simply want to be noticed?

Young children in school love to receive attention and be noticed. Adults also like to receive attention. It may even be the case that adults may have a conversation on the phone with someone simply for the sake of communicating with another person. When you have called someone "just to talk," has anyone ever told you "you need to call another time when you have something meaningful to say?" Perhaps "attention-seeking" behaviors are not always wrong.

If behavior is to avoid or escape a person, situation or activity, our response should be "why do they want to avoid this activity." Instead of calling someone "non compliant" we should begin thinking of the possible reasons for the behavior rather than reacting automatically. We seldom consider whether the individual is bored, frustrated, frightened, does not understand, or finds the situation or activity meaningless. Would any of us want to show up for work if it was meaningless and we were paid poorly? Or would we want to attend classes in school where the subject didn't interest us or was boring? Could avoidance behavior be the result of other issues such as not thoroughly understanding the situation, not introducing a new person, or not creating an environment that supports the individual's learning style? It may be important to consider the following questions: What can be changed about or within the activity? What is really necessary for the individual to learn? How are the activities and situations meaningful to the individual's future life? There is much to consider when an individual avoids or escapes. Along with the avoidance behaviors, Lovett discusses aggression.

"One of the most common 'difficult behaviors' is aggression. Most people do not like to be hit, or to live or work where violence is a common occurrence. But labeling a person, or even a behavior, as aggressive in a clinical context has a radically different dynamic from respecting the reasons a person might be legitimately angry in a social context: being bossed about, being sexually frustrated, being insulted, or rejected or any of the dozens of other real and individual reasons anyone might have for being angry. It seems strange and perverse to persist in seeing these reasons strictly in our own terms rather than also in the ways the person who is angry sees them (Lovett 1996)."

Certain repetitive behaviors, sometimes called "self-stimulation behaviors," may also be sensory in nature. Individuals may engage in these behaviors when they are bored, frustrated, stressed, or need to "chill out." Most of us resort to sensory-type behaviors when we are bored, stressed, or frustrated, however, our behaviors are not as obvious. We wiggle in our seats, tap our feet, chew on erasers, hum tunes, bite our nails, or fiddle with jewelry to maintain attention or to calm ourselves when feeling anxious. We may want to be alone if we are stressed or need to have some "space." Often when the individual with disabilities uses "self-stim," we decide that we should extinguish the behavior because it is inappropriate, or makes the individual stand out as very different. Perhaps we feel uncomfortable with the behavior and how it might reflect on us as teachers, parents or other supports. Lovett (1996) states, "By labeling people's behavior we often feel that we have the right to act on how the behavior affects us rather than on what the person doing it might be trying to communicate." If that is the case, maybe we should look more closely at those situations when individuals engage in sensory (self-stim) behaviors and instead of simply telling them to "stop" ask ourselves, "Why?" or "How can I help?" or "Does the person need help?"

Remember the language we use is powerful and can set a tone in which people's behaviors and motives are dismissed and demeaned. The important concept is to remember that all behavior is communication. So when an individual "misbehaves," rather than merely reacting and putting the behavior into a disability framework as something to be corrected, we should ask "Why?" "What is being said?" "What do they want?" and "How can I help them get what they want?"

We can begin to reframe our thinking by forming support teams around individuals who may be challenging. Rather than focusing on incident reports at meetings, share stories and look for strengths, preferences, interests, motivators, fears and frustrations. Rather than discussing the data and behavior incident reports that everyone already knows, begin to focus on the person's history and personality in order to get a different perspective for why some behaviors may be occurring. Share positive information as freely as "negative" information is shared. Include the individual whenever possible to get their feedback. Build on the strengths instead of creating a curriculum where each individual goes to school and "majors in their deficits." Create supportive communities for everyone by listening to the behaviors, avoiding labels, and asking, "Why?" or "What can I do to help?"

Davis, K. (1999). “Your attitude just might be my greatest barrier.” The Reporter, 4(2), 1-3, 13.
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Backpeddling - Stupid is as stupid does

2008-07-22T10:26:00.000-07:00

A few days ago, a tasteless radio talk show host issued inflammatory commentary regarding kids with autism and their parents. I originally chose not to post on the subject, but rather wrote privately, off-list, to people touched by autism, discussing the blatant ignorance and hatred exuded by the transcript of his show. However, I changed my non-post decision when I saw this article regarding Savage's pathetic attempt at "reframing" his statements as a "misunderstanding." Truthfully, the more he says, the more he puts his foot in it. Obviously, if you are not a privileged white male, you are considered a legitimate target of this man's anger management problems.

AUTISTIC CONJECTURE OF THE DAY:
Stupid is as stupid does

NEW YORK — Conservative radio talk show jock Michael Savage used his nationally syndicated show Monday to defend his controversial remarks on autism as “taken out of context” as outraged parents of autistic children protested earlier in the day outside the offices of his local New York broadcaster.

He was attacking, he said, the overdiagnosis of autism in children to benefit a “greedy, corrupt medical/pharmaceutical establishment.

“There is no autism epidemic,” he said. “Autism in its true form is a tragedy for the child and his parents.”

The remarks that stirred the protests and backlash aired on Wednesday’s broadcast of his show, “The Savage Nation,” which is heard by more than 8 million listeners each weekday on more than 350 stations.

On it, he more typically attacks targets such as Democrats, lawyers representing prisoners at Guantanamo, the American Civil Liberties Union, gays, undocumented immigrants, feminists and Islamic groups he accuses of supporting terrorism.

Protesters urge firing

In remarks he later characterized as directed at the large number of diagnosed children who he feels are not truly autistic, he called autism “a fraud, a racket. ... I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. ... What do you mean they scream and they’re silent? They don’t have a father around to tell them, don’t act like a moron. ... Act like a man. Don’t sit there crying and screaming, idiot.’”

Several dozen parents and protesters stood before WOR-Radio’s office in Manhattan, holding signs such as “Fire Savage.” John Gilmore, executive director of Autism United, a coalition of autism groups, said, “If someone wanted to pick the most vulnerable group in the country, you’d be hard pressed to find one easier than autistic children.”

Gilmore is the father of an 8-year-old nonverbal son diagnosed with autism, and said representatives of Home Depot and Aflac, an insurance company, had contacted his group to say they would make sure their advertising spots did not appear during broadcasts of “The Savage Nation.”

His group says the number of children diagnosed with autism has increased at a rate of about 15 percent a year for the past 20 years; the U.S. Centers for Disease Control says about one in 150 children are on the autism spectrum. More than half, Autism United says, have an IQ that places them in the mentally disabled range, and half of autistic people never learn to speak.

Savage attacked the group Media Matters for America, a nonprofit media watchdog with a mission to correct “conservative misinformation,” which disseminated his remarks, as a “Stalinist communist” organization that took his remarks out of context.

“What Michael Savage said was foolish, mean-spirited, and hurtful,” said J. Jioni Palmer, spokesman for Media Matters. “It’s unfortunate he would use his radio program to make fun of and belittle these kids. Instead of ridicule and cheap shots, the children suffering from autism and asthma and their families need support and compassion.”

In the July 16 broadcast, Savage alsohad dismissed the high rate of asthma diagnoses among minority children as a “money racket” by families to get higher welfare payments.

“My comments about autism were meant to boldly awaken parents and children to the medical community’s attempt to label too many children or adults as autistic,”he wrote on his Web site and read on his broadcast Monday. “Many children are being victimized by being diagnosed with an illness, which may not exist in all cases. ... Let the truly autistic be treated. Let the falsely diagnosed be free.

“There is no definitive medical diagnosis for autism, none. It’s all subjective,” Savage, who has written a book against giving drugs to children called “Healing Children Naturally,” said on his show Monday. He recounted his own behaviors as a child, such as ritualistically lining up shoes and repeatedly counting bathroom tiles, which are now on a list of obsessive, autisticlike behaviors used in making diagnoses.

Restrained tone not enough

While Savage’s tone was more restrained on Monday, last week’s remarks left many parents wounded and angry.

“Tell him to come to my house, and he can spend a whole day to see how we go,” said Rick Dombroski of Holbrook, N.Y., father of a minimally verbal autistic son. “I personally want him, his boss, his sponsors to come spend a day with an actual child and his mom and dad, and come see what it’s really like. Then he can tell everybody the truth. They’re not brats.”

A Penchant for Symmetry

2008-07-20T22:02:00.000-07:00

.................No world news today, just a few cute pictures of my son and his latest passion - construction. These are his own creations, working alone and without consultation (except, perhaps, his buddy in one of these pictures). I'm amazed at how he has developed a taste for symmetrical architecture. He's a smarty, he is!

More on the Role of Experience in Genetic Expression

2008-07-18T19:09:00.000-07:00

AUTISTIC CONJECTURE OF THE DAY:
Nature/nurture Gene Link Sheds New Light On Autism
ScienceDaily (July 17, 2008)

Neuroscientists at MIT's Picower Institute for Learning and Memory found that a previously unsuspected set of genes links nature and nurture during a crucial period of brain development.

The results, reported in the July 8 issue of the Proceedings of the National Academy of Sciences (PNAS), could lead to treatments for autism and other disorders thought to be tied to brain changes that occur when the developing brain is very susceptible to inputs from the outside world. Nature--in the form of genes--and nurture--in the form of environmental influences--are fundamentally intertwined during this period.

"Our work points to how a disorder can be genetic and yet be dependent on the environment," said co-author Mriganka Sur, Sherman Fairchild Professor of Neuroscience at the Picower Institute and chair of MIT's brain and cognitive sciences department. "Many genes require activity to be expressed and make their assigned proteins. They alter their expression when activity is altered. Thus, we reveal an important mechanism of brain development that should open up a window into the mechanisms and treatment of brain disorders such as autism."

In the brain, some genes are only expressed, or turned on, in response to stimulus from the outside world. Like a panel of switches that turn lights on and off, genes that don't receive electricity don't "turn on" and express their particular proteins.

Sur and colleagues found a set of novel genes--including a calcium sensor called cardiac Troponin C, or cTropC--particularly sensitive to a critical period of development. The lack of proteins from these genes during a key phase of development could be one of the culprits in developing autism.

Researchers have long investigated the molecular mechanisms involved in monocular deprivation--when one eye is deprived of sight during a critical period of brain development, that eye becomes permanently blind, even after it is uncovered. This phenomenon is considered an important model for brain development because synapses for the covered eye--deprived of environmental stimulus, or what Sur calls "nurture"--shrivel up or get reassigned to other uses.

Sur and his colleagues looked at which genes are expressed, and which are not, when this phenomenon occurs. They hoped to pin down the correlation between nature--meaning the genes--and the external environment, or nurture. By identifying which genes are particularly apt to switch their expression patterns in response to "nurture," the researchers potentially narrowed down the ones that may be implicated in developmental disorders.

Researchers believe autism spectrum disorders are tied to brain changes that occur during critical periods of development. Different but overlapping critical periods are thought to exist for various cognitive functions affected in autism, such as language and social behaviors.

"Autism is a strongly genetic disorder: genes set up risk factors but by themselves simply make proteins," Sur said. "Genes work together with other influences. In the case of autism, these influences are unknown but could be molecules made by other genes or chemicals from the environment."

If scientists understood how genes changed in response to environmental influences during this crucial developmental period, they might be able to one day prevent or reverse the changes.

In addition to Sur, authors are Alvin W. Lyckman, a former MIT postdoctoral associate now at Tufts University; MIT brain and cognitive sciences graduate students Sam H. Horng and Cortina L. McCurry; Picower Institute postdoctoral fellows Daniela Tropea and Audra Van Wart and colleagues from other institutions.

This work is supported by the National Institutes of Health and the Simons Foundation.

A More Plausible Genetic Etiology?

2008-07-11T23:21:00.000-07:00

For the moment, I believe that the theory described in the following article may hold promise. Epigenetics, or the study of how the environment shapes genetic expression is a field rapidly gaining in supporting evidence. At the most basic level, it is logical. By way of example...a child who is starved may never reach full "genetically programmed" height. The subtleties within the possibilities of epigenetics range far afield from such crude and blatant observations. We know that the human brain is not fixed - it can develop in many possible ways, fully dependent upon the environment in which it is expected to survive. We are now finding that genes - the very blueprints of our design - can be turned on and off by environmental factors, which help to explain why identical twins might turn out not-so-identical.

The theory proposed in this Mid Eastern study suggests that autism is not a genetic defect such as an aneuploidy, but rather a situation in which certain genes that should be "turned on" are turned off. Out of order. Not in service. This would account for the positive outcomes seen with early intervention. Diligent efforts to reach these children, on their own terms, in ways which they can understand may very well serve to activate the vacationing segments of their genetic code. Environment shapes the genetic expression. Food fosters growth, interaction fosters social awareness and communicative competence. Maybe that original, simplistic explanation offered above was not so crude after all.

AUTISTIC CONJECTURE OF THE DAY:
Turning on the Switched-Off Genes

Gene clues from Mideast suggest autism occurs when brain cannot learn properly from early life
The Associated PressPublished: July 11, 2008

WASHINGTON: Harvard University researchers have discovered half a dozen new genes involved in autism that suggest the disorder strikes in a brain that cannot properly form new connections.

The findings, based on families in the Middle East, Turkey and Pakistan, also may help explain why intense education programs do help some autistic children: certain genes that respond to experience were not missing but were merely stuck in the "off" position.

"The circuits are there, but you have to give it an extra push," said Dr. Gary Goldstein of the Kennedy Krieger Institute in Baltimore, Maryland, which was not involved in the gene hunt but is well-known for its autism behavioral therapy.

The genetics suggest that "what we're doing makes sense when we work with these little kids — and work and work and work — and suddenly get through," he said.

But the study's bigger message is that autism is too strikingly individual to envision an easy gene test for it. Instead, patients are turning out to have a wide variety, almost a custom set, of gene defects.

Today in Americas

Economic adviser's comment complicates McCain campaign

Serenity Prayer faces challenge on authorship

An interpreter speaking up for migrants

"Almost every kid with autism has their own particular cause of it," said Dr. Christopher Walsh, chief of genetics at Children's Hospital Boston, who led the research published in Friday's edition of the journal Science.

Autism spectrum disorders include a range of poorly understood brain conditions, from the mild Asperger's syndrome to more severe autism characterized by poor social interaction, impaired communication and repetitious behaviors.

It is clear that genes play a big role in autism, from studies of twins and families with multiple affected children. But so far, the genetic cause is known for only about 15 percent of autism cases, Walsh said.

So Walsh's team took a new tack. They turned to the Middle East, a part of the world with large families and a tendency for cousins to marry, characteristics that increase the odds of finding rare genes. They recruited 88 families with cousin marriages and high incidences of autism, from Jordan, Saudi Arabia, Kuwait, Oman, Pakistan, Qatar, Turkey and the United Arab Emirates. They compared the DNA of family members to search for what are called recessive mutations, where the mother and father can be healthy carriers of a gene defect but a child who inherits that defect from both parents gets sick.

In some of the families, they found large chunks of missing DNA regions that followed that recessive rule. The missing regions varied among families, but they affected at least six genes that play a role in autism.

Here is why this matters: All the genes seem to be part of a network involved in a basic foundation of learning, how neurons respond to new experiences by forming synapses, or connections between each other.

In the first year or two of life, when autism symptoms appear, synapses rapidly form and mature, and unnecessary ones are "pruned" back. In other words, a baby's brain is literally being shaped by its first experiences so that it is structurally able to perform learning and other functions of later life.

"This paper points to problems specifically in the way that experience sculpts the developing brain," explained Dr. Thomas Insel, director of the National Institute of Mental Health, which helped pay for the work.

Some earlier research had pointed to the same underlying problem, so these newly found genes "join a growing list to suggest that autism is a synaptic disorder," he said.

If that sounds discouraging, here is the good news: The missing DNA did not always translate into missing genes. Instead what usually was missing were the on/off switches for these autism-related genes. Essentially, some genes were asleep instead of doing their synapse work.

"I find that hopeful" because "there are ways that are being discovered to activate genes," Walsh said. "This might be an unanticipated way of developing therapies in the long term for autism: Identifying these kids where all the right genes are present, just not turned on in the right way."

At Kennedy Krieger, Goldstein thinks the work may provide a gene-level explanation for why some children already are helped by intense therapy.

"We have trouble getting through to these children, but with repeated stimulation we can do it," he said. "These are circuits that have an ability not so much to recover but to work around the problem."

Hippotherapy

2008-06-25T16:58:00.001-07:00

My young'uns enjoyed their first hippotherapy session of the season. Unfortunately, the providers of this service may have to discontinue the therapy sessions after this summer. Click on the link above to learn more.

IEP Alert Levels

2008-06-24T10:13:00.000-07:00

Faces of Autism

2008-06-19T15:14:00.000-07:00

My son was a participant in a public service announcement filmed at his autism preschool. He's the cute one :) .

AUTISTIC CONJECTURE OF THE DAY:
Faces of Autism

Maybe I should move back to Maryland

2008-06-17T11:24:00.000-07:00

I attended Montgomery County Public Schools - graduated from there in 1976, and was quickly transplanted to the opposite coast courtesy of IBM (or I've Been Moved, as we IBM brats like to call it). Honestly, I had a great education. In fact, I took college courses that were *easier* than my equivalent high school courses had been. So, if nothing else, I am a believer (at least back then) in the quality of the MCPS educational offerings.

Recently, this article landed in my email box. A classroom has been designed for children with Asperger's, giving them the supports they need to be successful in the general curriculum and with the hopes of enabling them to self-monitor sufficiently to be able to fully mainstream one day.

Maybe it is time for me to move back to Maryland...

AUTISTIC CONJECTURE OF THE DAY
Gaithersburg School Tailors Teaching To Help Students Cope With Disorder
Washington Post Staff Writer
Monday, June 16, 2008; B01

The first day of kindergarten found Alex Barth in the principal's office. The teacher had asked students to draw self-portraits. Alex had wanted to draw his in red crayon. There was no red crayon. Alex had melted down.

Alex was a capable child with superior intelligence -- and no end of eccentricities. He would flee noisy school assemblies. He couldn't bear the smell of the cafeteria. By the end of first grade, his mother was spending much of the day at Alex's side.

Robyne Barth soon learned her son had Asperger syndrome, a developmental disorder on the autism spectrum. Children with the disorder, known in shorthand as Asperger's, might have strong academic gifts but deficiencies in such social skills as carrying on a conversation and playing with others at recess.

On Thursday, Alex, 10, finished fourth grade at one of the nation's few public schools with a program tailored to children with Asperger's: Diamond Elementary School in Gaithersburg. He is popular and well-adjusted, and spends more and more of his school days in regular classes.

"I couldn't see my child as anything. I couldn't imagine him having a normal life," said Barth, of North Potomac. "And now, my child has a personality. He's funny. I can see him as an engineer. I can see him as an architect. I can see his life."

The program at Diamond Elementary is one of several in Montgomery County for children who have average to above-average intelligence but are coping with developmental disabilities. It addresses one of the most vexing problems in special education: What to do with a child who is disabled but capable of work at or above grade level? Such programs are unusual in public education. Because children with Asperger's often are bright and capable, albeit with some behavioral quirks, schools tend to assign them to regular classrooms, either missing or misdiagnosing their disability.

"Do you guys need a minute to draw a picture on your angry page?" teacher Cheryl Reed asked five Diamond Elementary students with Asperger's one afternoon last week. It was an exercise in personification, a concept each of the first- and second-graders seemed to understand perfectly, although they kept mispronouncing the word with the accent on the first syllable.

Second-grader Justin Daddona completed his picture, a sort of Maurice Sendak creation, and regarded it in triumph. "He's more than angry, he's furious," Justin said. "Look, his hair's coming off and smoke's coming out of his ears."

The program, with two teachers and four aides serving 15 children, focuses on two goals: teaching students to recognize and cope with manifestations of their disorder, such as a panic attack in the gymnasium or uncontrollable restlessness in math class; and easing them into regular classes to the greatest extent appropriate, a process called mainstreaming, which drives special education across the country.

The Asperger's program began seven years ago, part of an expanding suite of services for an autism population that tops 1,000 students in the 137,000-student system and is growing by 17 percent a year. It is housed at Diamond and Sligo Creek elementary schools and Tilden and Montgomery Village middle schools, serving students countywide.

Asperger's falls at the mild end of the autism spectrum, a range of disorders characterized by impairment in social interaction and communication. By varying estimates, Asperger's affects anywhere from one in 30,000 people to one in 200.

Hans Asperger, the Viennese physician who discovered the disorder, termed his subjects "little professors." In regular classes, such children might end up as misfits, prone to ill-timed outbursts, fidgety and frustrated, unable to read the body language of the agitated teacher hovering over them.

"The large, 25-kid classroom is too much for a lot of these kids," said Lucia Claster, an Arlington County parent who leads a support group of more than 120 families of children with Asperger's. "They're dealing with a general education teacher [who] may never have had a child with Asperger's before."

James Ball, a behavior analyst in Cranbury, N.J., who has consulted nationally on autism, said the Montgomery County effort "should be looked at as a model program" for teaching children with Asperger's, "because they are a unique breed of kids, and they do respond to a variety of unique teaching strategies."

An informal survey of local school systems found one other example, in Anne Arundel County, of a program designed for students with Asperger's or high-functioning autism, an umbrella term for children on the autism spectrum with average to above-average IQs. Anne Arundel schools team with a private special education school to help autism-spectrum children move into regular classes at two schools, Severn River Middle and Severna Park High.

The Hannah More program in Anne Arundel and the Asperger's program in Montgomery have similar structures. Students work their way from small, self-contained classes into regular classes over time, with support ranging from one-on-one help in the classroom to an occasional check-in with special educators.

The Asperger's classroom at Diamond Elementary is a home base for students, with an oasis of books, board games, yoga balls and Hot Wheels cars, to which any child can retreat from the regular classroom if things go awry. Students are trained to raise their hands if they need a break, and the entire school staff knows to respond.

That afternoon, Reed prepared her first- and second-graders for a schoolwide assembly, one of the most challenging scenarios for children with heightened sensitivity to stimuli. "Are we going to be screaming with our mouths?" Reed asked. No, the class responded in unison. "The only sound we're going to hear is what? Our hands," she said.

Each child in the program signs a behavior contract, agreeing to work on social skills: I will listen to instructions the first time. I will complete an assignment with one or fewer reminders. Good behavior is rewarded with Diamond Dolphin Dollars, which are redeemable for prizes.

Parent Staci Daddona of Gaithersburg said she is amazed at how well Reed's methods have worked with Justin, 7.

Justin's preschool experience was a nightmare: He would take one toy, a top, and play with it day after day, ignoring the teacher and the rest of class. At home, he took to opening and closing things -- the blinds, the garage door -- and flushed the toilet with such regularity that the family's water bill spiked.

Every attempt at public education failed until this year, Daddona said. Reed not only taught Justin to focus on his studies but also worked him into regular classes for part of the day. She has taught him to recognize when he is becoming anxious or upset, if she doesn't spot it first.

"When he starts to stand up, he'll press on the desk, because he's trying to calm himself that way," she said. "And she'll say, 'It looks like you need a break.' And that happens before he throws a pencil, and all the things that happened last year."

Tax Free Savings for Special Needs

2008-06-13T21:35:00.001-07:00

I like this idea. When Jakob was first diagnosed as having autism, and I was not yet free from the "tragedy" rhetoric that "guaranteed" my son a life of "suffering" and "dysfunction", I wondered what I could do with the college fund begun for him. "Obviously", he would never attend college.

Thank goodness I was wrong. He is high functioning, intelligent, and definitely college material, God willin' and the crick don't rise!

But, what if that hadn't been the likely outcome? Why should I only be able to "shelter" money for typical children's future needs, and not the future needs of a disabled child? Special needs trusts do exist, but this program seems to go beyond that, allowing for savings and expenditures NOW, as needed.

AUTISTIC CONJECTURE OF THE DAY:

Equity for the Disabled

PARENTS WHO want help saving for their children's college education enjoy generous tax breaks. Parents of disabled children, including children who have little or no hope of going to college, receive no such benefit to help defray the enormous extra costs their children may incur.

Several pieces of legislation have been introduced in Congress to create tax-free savings accounts for people with disabilities. In the Senate, one version is sponsored by Sen. Christopher J. Dodd (D-Conn.) and another by Sens. Robert P. Casey (D-Pa.) and Orrin G. Hatch (R-Utah). A version similar to the Casey-Hatch bill was introduced in the House last month by Rep. Ander Crenshaw (R-Fla.).

Although they differ in some details, these measures would allow parents, other family members or those with disabilities themselves to put money into special accounts; the savings would grow tax free and would not be taxed when withdrawn to pay for qualified expenses. Such accounts are a worthy idea that would address the current inequity in the tax code. As important, they would enable families of people with disabilities to provide a financial cushion without endangering recipients' eligibility for Medicaid and Supplemental Security Income benefits.

These accounts also pose complicated questions, especially about their interaction with benefits eligibility. Currently, those programs impose strict asset limits. The account proposals provide that money deposited in the accounts not count against eligibility. The trick is to permit parents to provide some extra help for children with disabilities without encouraging wealthy people who could easily pay for health care and other needs to sock away large sums in these accounts while moving family members onto government benefits. What limits should be put on the size of the accounts or on total contributions? Should eligible expenses include housing? Should money left over in an account after a person's death be given to the government to reimburse its expenditures? These are critical but resolvable details to be worked out as this worthy idea moves forward.

Isn't this obvious?

2008-06-06T11:21:00.000-07:00

Anybody who has ever done any strenuous thinking has utilized the strategy of staring into space or closing the eyes to help remove distraction and consolidate focus. It is amazing that researchers have only recently validated this strategy. Perhaps this is why I was never offended or "worked up" about my son's lack of eye contact in his early autism days. And also why I was never a teacher that demanded eye contact in the "typical" classroom. There are many ways to acknowledge attention. Eye contact is only one.

Autistic Conjecture of the Day:

Knowing Looks: Using Gaze Aversion To Tell When Children Are Learning

ScienceDaily (Jun. 5, 2008) — People use eye contact in a variety of ways every minute of every day but how often do you find yourself staring into space with concentrating on an issue or problem? Psychologists now know that people who are carrying out a complex task tend to look away from anyone else who is nearby. They refer to it as 'gaze aversion'.

Now they are finding out how to use changes in a child's gaze aversion to understand their educational progress. A group led by Dr Gwyneth Doherty-Sneddon at the University of Stirling, and funded by Economic and Social Research Council, has looked at gaze aversion in both children and adults.

They found that children aged 4-6 are more likely to avert their gaze when they are carrying out a task that they find difficult, or new to them. They also avert their gaze less if they are being tested by someone they know.

When observing 5-8 year-olds, the researchers found that gaze aversion is related to the complexity of the task being undertaken, rather than to other stimuli. The results were consistent for a variety of settings and for a range of tasks, such as balancing a beam with asymmetrical loads.

Dr Doherty-Sneddon said: "These results are important because they show that children avert their gaze when they are trying to carry out a task which is difficult or with which they are not yet familiar. In our most recent work we have investigated whether gaze aversion is associated with transitional knowledge states. That means that gaze aversion is a useful thing for teachers, carers and parents to know about."

She says that, from the point of view of the teacher, gaze aversion is a positive sign. A child who is doing it is likely to be developing their understanding and is what Dr Doherty-Sneddon terms an "improver". By contrast, children who are not improving their performance, or who are regressing, use gaze aversion less often.

Keeping an eye on gaze aversion is especially valuable for teachers and social workers who are trying to understand the mental state of people with: Autistic spectrum disorders (ASD); Attention Deficit Hyperactivity Disorder (ADHD); or Williams Syndrome, the genetic condition popularly called Cocktail Party Syndrome. "People with Williams Syndrome have been characterised as being hypersociable and using excessive amounts of eye contact, which is an interesting contrast to people with autism. Our gaze aversion work promises to provide new and important insights into the mental and social functioning of such groups" says Dr Doherty-Sneddon.

The research project 'Children's Eye Gaze: Associated Cognitive and Physiological States' was funded by the Economic and Social Research Council and carried out by Dr Gwyneth Doherty-Sneddon from the University of Stirling.

This is outrageous!

2008-05-31T14:07:00.000-07:00

Okay...I approach this from several perspectives. Let's put aside my "momma bear" instincts for a moment, and look at it from a professional perspective. After all, I've taught for over 14 years, and two of those years were as a kindergarten teacher. The purpose of kindergarten is to "sell" kids on learning. To make them excited each morning as they make their way to the classroom. To instill the basic skills that will assure success in the subsequent years. Affective and academic are inextricably intertwined.

That being said, how the HELL did this woman, an allegedly licensed practitioner of the teaching profession, justify her actions? She did no more than engage in institutionally sanctioned bullying against a child with a disability. And as such, she violated federal IDEA laws and ADA laws. Not to mention the typically accepted nationwide sanctions against bullying.

Many have come to her defense, but I can find no excuse. She needs to be out of the classroom, permanently. With penalties and consequences that extend beyond her classroom, as what she has done to this child will color the rest of his educational career.

And while others are debating whether he has autism or not, a quick look at the list of "intolerable" behaviors that the teacher encouraged the children to belittle him about show tendencies all too typical of a child with autism. Diagnosis or not, this child needed supports, not humiliation.

AUTISTIC CONJECTURE OF THE DAY:
Institutionalized Bullying

On May 21, Alex Barton, age 5, was escorted out of his kindergarten classroom at Morningside Elementary in Port St. Lucie, Fla., by the local police department's "school resource officer." Alex, who is autistic, was taken to the assistant principal, to whom he promised he would "not kick students, throw crayons, eat crayons, crawl under the table, kick the table of other students ... [or] disrupt the class," according to a police report. (See excerpts below and on the following six pages.) The assistant principal tucked in Alex's shirt, put his "shoes on the right feet and tied them," and sent Alex back to class. During Alex's absence, his teacher, Wendy Portillo, "gathered the students to talk with them" about the youngster's misbehavior.

When Alex returned, Portillo, who has been teaching in Port Lucie for 12 years, directed the youngster to the front of the room and "asked him to listen to what the children didn't like" about him. According to Alex, the children complained that he "eats paper, picks boogers … and bites his shoelaces," and Portillo herself said, "I hate you right now. I don't like you today." (Page 2). Portillo next "polled the class" about whether to let Alex back in (Page 4). Alex lost the class vote, 14-2, and spent the rest of the school day in the nurse's office. That night, Alex "did not eat dinner [and] would not sleep in his own bed." (Page 2).

The day after Alex's kindergarten show trial, his furious mother contacted the police school resource officer to report Portillo for child abuse. The police officer interviewed Alex ("Mrs. Portillo is very mean," Page 2); the teacher ("the students in class were all her priority," Page 3); and several child witnesses (Pages 5 and 6), and in the end concluded there was no "probable cause" for criminal child abuse (Page 6). The St. Lucie County Public School District is still investigating whether any department regulations were violated.

This accounts for a lot

2008-05-06T19:10:00.000-07:00

My family ... OY! I wonder if any other branch of the human family tree has as many paranoid, obsessive compulsive, schizophrenic, bipolar, or depressed individuals as mine does. Mind you - this was one reason I reached outside of the immediate gene pool to have Autumn and Jakob. And what do you know...there is a link between family schizophrenia and autism. Maybe one of my (colorful, to say the least) family members is correct, and schizophrenia is contagious!

AUTISTIC CONJECTURE OF THE DAY

Autistic Child, Schizophrenic Parent

Child's autism linked to parents' mental illness

Having a schizophrenic parent roughly doubles risk of disorder, study finds

CHICAGO - In another sign pointing to an inherited component to autism, a study released on Monday found that having a schizophrenic parent or a mother with psychiatric problems roughly doubled a child's risk of being autistic.

"Our research shows that mothers and fathers diagnosed with schizophrenia were about twice as likely to have a child diagnosed with autism," said Julie Daniels of the University of North Carolina, Chapel Hill, who worked on the study.

"We also saw higher rates of depression and personality disorders among mothers, but not fathers," she said in a statement.

The study of families in Sweden with children born between 1977 and 2003 involved 1,227 children diagnosed with autism. They were compared with families of nearly 31,000 children who did not have autism. Sweden's detailed health registry provides a wealth of data for such studies.

Autism, which is marked by impaired social interaction and communication, or a related disorder like Asperger's syndrome, affects an estimated one out of every 150 U.S. children, the U.S. Centers for Disease Control and Prevention estimates. Asperger's is marked by mild social awkwardness.

No one knows what causes autism, but researchers think it is likely that several genes and possibly environmental factors contribute. Some autism advocates believe childhood vaccinations play a role, although most medical experts say it is extremely unlikely.

Which genes lie behind various mental illnesses are also poorly understood, according to the researchers, whose study appeared in the journal Pediatrics, published by the American Academy of Pediatrics.

"Earlier studies have shown a higher rate of psychiatric disorders in families of autistic children than in the general population," Daniels said.

The association between a child's autism and mental illness in the parent was strongest with schizophrenia, and was less powerful when the mother suffered from depression or personality disorders. There was little association between autism and parental addiction to alcohol or drugs or some other types of mental illness.

It was not clear if it was significant that having a mother, but not a father, with certain mental illnesses, raised the risk of autism.

"Establishing an association between autism and other psychiatric disorders might enable future investigators to better focus on genetic and environmental factors that might be shared among these disorders," Daniels said.

Spot On

2008-05-01T19:22:00.000-07:00

Here a spot, there a spot, everywhere a spot, spot. Seems like measles are on the increase. No surprise, with so many waving the MMR shot. I am reminded of the tragic tales of Native People exposed to the micro-organisms and disease of western civilization. How far will this go before reason rules?

AUTISTIC CONJECTURE OF THE DAY:
Measles on the Increase

U.S. reports biggest measles outbreak since 2001

Thu May 1, 2008 3:55pm EDT

By Will Dunham
http://www.reuters.com/article/latestCrisis/idUSN01435942

WASHINGTON (Reuters) - The biggest U.S. outbreak of measles since 2001 is unfolding in 10 states, with at least 72 people ranging from infants to the elderly becoming ill -- most of them unvaccinated, U.S. health officials said Thursday.

The U.S. Centers for Disease Control and Prevention said said none of those who caught the highly contagious viral illness has died, but at least 14 people have been hospitalized, most with pneumonia triggered by measles.

There were 116 cases in 2001, and the last major U.S. outbreak occurred from 1989 to 1991, when 55,000 people got measles and 123 died.

Anne Schuchat, who heads the CDC's National Center for Immunization and Respiratory Diseases, said she expects "many more cases this year than we had in 2001 based on what's going on today."

Public health officials have been stressing the import! ance of immunizing children in the face of increasingly vocal groups who object to vaccines for religious reasons or because they think the shots may cause autism or other problems.

CDC officials said overwhelming scientific evidence points to the safety of the combined measles-mumps-rubella, or MMR, shot and other childhood vaccines.

"We are concerned ... about the population of people who are choosing not to be vaccinated, and whether we may be on the verge of facing larger-scale outbreaks in the United States," said Jane Seward of the CDC's division of viral diseases.

The CDC said most of the measles cases can be traced to 10 people who picked up the disease overseas and then traveled back to the United States, where others became infected. The ages of those sickened ranged from 5 months to 71 years.

GLOBAL PROBLEM

"These cases and outbreaks resulted primarily from failure to vaccinate, many! because of personal or religious belief exemption," the agency s aid in a statement.

The CDC said 64 cases were reported from Jan. 1 through April 25 in Arizona, California, Hawaii, Illinois, Michigan, New York, Pennsylvania, Virginia and Wisconsin.

Eight more confirmed cases -- all involving unvaccinated children in one family who had attended a church gathering in the Seattle area -- have been reported since then in Washington state, the state department of health said Thursday.

Those spreading measles were infected in Switzerland and Israel, both of which have larger outbreaks, as well as in India, Belgium, Italy and likely China and Japan, the CDC said.

"Transmission has occurred in community and health care settings, including homes, child care centers, schools, hospitals, emergency rooms and physicians' offices," it said.

The disease causes fever, cough, redness and irritation of the eyes and a rash. Serious complications include encephalitis and pneumonia that ca! n be fatal. Measles remains a leading cause of death among children in poor countries, killing about 250,000 people a year globally.

Before a vaccine was introduced in 1963, more than half a million people got measles in the United States and 500 died annually. Thanks to the vaccination program, measles is no longer endemic in the United States, and ongoing transmission of the virus was declared eliminated in 2000.

The annual number of cases since then generally has been in the dozens and caused by someone infected in another country. (Editing by Maggie Fox and Xavier Briand)

The Genetic Connection

2008-05-01T14:17:00.000-07:00

Here is an article I can relate to. Six families used the same sperm donor. In those families, four of the children have been diagnosed (or are pending a diagnosis)

AUTISTIC CONJECTURE OF THE DAY:
It's In the Genes

Through a Web site called Donor Sibling Registry, Ms. Jackaway, a mother of a child with autism "fathered" by anonymous Donor X. at a sperm bank, reached out to other women who used Donor X. She found six families who had used the same donor.

Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola's son, Joseph, 2, exhibiting some of the same behavior as her son.

"He was walking on his toes; he was flapping his hands. There seemed to be eye contact issues," recalled Jackaway, who immediately suggested screening Joseph for autism.

"She told me that she saw characteristics of autism, and it was very upsetting to me at that time," Pergola said. "I didn't know what to expect from that point on. I know I was scared, and she was there to let me know that it was going to be OK."

Pergola says she was afraid because she had an image of autism in her head and believed her son would be "in the corner and rocking and not talking."

She says Jackaway reassured her that wouldn't be the case.

One month later, a test confirmed what Pergola already knew: Joseph was autistic. The diagnosis brought her to tears, and now these two women whose sons share a father were immediately connected by another bond: autism.

"She was terribly upset," Jackaway remembered. "That moment is a terribly frightening moment. You get handed a diagnosis, and you get handed an entirely new future."
Health Library

In six families Jackaway contacted that had used Donor X, three of the children are autistic, and one is showing signs of autism.

But would Jackaway be happier today if there had been a way to screen Donor X for an autism gene?

"I've done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn't Dylan," Jackaway said. "I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don't have autism; they are autistic. It's part of who they are."

There is currently no way to screen for autism, and in a statement, the company said in part:

"There is no current genetic test to detect autism. California Cryobank (CCB) employs one of the most thorough and rigorous donor screening processes in the industry, with less than 1% of all applicants actually becoming donors. The standard CCB procedure for screening donors involves extensive physical, genetic and health screening ..."

Since the discovery of autism in some of the families that used Donor X, Cryobank had this to say about his samples:

"... per CCB policy, the donor's samples were removed from the general catalog. These vials may only be sold to a client who has previously used specimens of this donor and is interested in ordering additional specimens. In this case the client is made aware of the new medical information and potential issues ..."
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The families don't blame the sperm bank. In fact, Theresa Pergola says she's still uncertain about an autism screening process, if and when it ever becomes available.

"It can go either way, on the one hand it could be helpful so that people could make choices about what risks they want to take," says Pergola. "On the other hand it's like, what else are they going to screen for, you know? Are they going to screen for certain personality traits? It's hard to say. It's really hard to say."

Preparing Autism Specialists for Schools

2008-04-29T23:10:00.000-07:00

The University of Oregon is famous for its highly ranked College of Education and Special Education programs. Recently, Project PASS has been added to the college's list of offerings. Students participate in practica and coursework covering curriculum, assessment, emotional/social/communication issues, cultural competency, alternative communication, professional practices, and teaming with parents and professionals. Some students opt for additional participation in research studies in the area of special interests and autism. Students in this program are heavily recruited, and according to the word on the street, all students completing the program have gone on to work in the field.

AUTISTIC CONJECTURE OF THE DAY
Project PASS

Program prepares educators for work with Autistic children
As autism rates rise, there is a greater need for teachers who understand the disorder
by Jill Kimball | News Reporter
PUBLISHED ON 4/28/08 IN News

"Mom, what's the American dream?" Mary Ann Winter-Messiers' son Jonathan once asked her.

"People usually see it as the mom, dad, two kids, picket fence, a dog," Winter-Messiers replied.

He said, "Can you still be an American if you have a different dream?"

Jonathan, now 13, has Asperger's Syndrome, a mild form of autism.

There's a saying within the community that treats and cares for autistic children: If you've met one child with autism, you've met one child with autism. No two are alike; they vary wildly in passion, paranoia and potential.

Winter-Messiers said her son is proof that children with autism should not be defined by their shortcomings, but by their "astounding insights and questions about life and about people and about God and how people interact. They're brilliant."

April is Autism Awareness Month, but for University professors and graduate students involved in Project PASS (Preparing Autism Specialists for Schools), "every month is autism awareness month," said Winter-Messiers, the program's coordinator.

Autism rates have greatly increased nationwide in recent years. In 2007, the Center for Disease Control's Autism and Developmental Disabilities Monitoring Network found that one in 150 8-year-old children in the U.S. had an Autism Spectrum Disorder - and "Oregon has either the highest or the second highest per capita (prevalence) in the nation," Winter-Messiers said.

In previous decades, studies found that ASD prevalence rates consistently hovered around four or five in every 10,000 children.

Little is known about why prevalence has increased so quickly in the last decade, but the statistics demand the need for more teachers who understand autism and its many facets.

"With ever-growing numbers of children diagnosed with autism in the U.S. and in our state, we must train educators specifically to work with children with autism so that they will be properly equipped and can serve these children with confidence," said Cynthia Herr, an education professor who teaches classes in the Project PASS program. "It is very rewarding to know that we are equipping educators with the skills, tools, and resources they need to serve these wonderful students appropriately."

Autism is a spectrum disorder because every child who lives with the condition behaves differently. However, most children with Asperger's Syndrome have one thing in common: They each have one very specific passion that consumes their entire life. Winter-Messiers and Herr are both involved in a research project involving these passions.

"These children have a highly focused area of passion - elephants, dust, elevators, running shoes, World War II planes, electrical cords, dinosaurs," Winter-Messiers said. "We research how it develops and what these passions look like. We think, 'How can we harness the power in these passions to help motivate them and help them develop career interests?'"

The program's students, which total about 10 each year, take a few classroom courses and two terms of practica, in which they have the opportunity to work with autistic students in schools.

"Our program is critical because children and youth with autism deserve educators who understand them and know how to teach them effectively," Herr said. "We train teachers to be successful with students with autism, so that those students can be successful in school and lead productive, meaningful lives."

Students who complete the 46 credits needed for the special education program and take additional courses through Project PASS will receive a master's degree in special education with a specialization in autism.

These students "are being highly sought after by school districts because school districts are desperate for people who know what they're doing," Winter-Messiers said.

Interest in special education at the University isn't limited to just these 10 students, though. About 45 to 50 students, both graduates and undergraduates, enroll in a general overview course Winter-Messiers teaches each fall.

"It indicates the broad general interest in autism in the community," Winter-Messiers said.

Like Winter-Messiers, many of the students who take courses and practica through Project PASS found their passion through autistic children of their own.

"People tend to be very passionate about it - in a great majority of the time, it's because they have a child, a grandchild, a niece that has autism," Winter-Messiers said.

Her son and her students still keep her enthusiasm and motivation high in her day-to-day work.

"It's very challenging, and it can be very exhausting," Winter-Messiers said, but "there are a lot of surprises in autism in the sense that you can't take things for granted. Things can change quickly. That fuels my energy."

Neurodiversity in the News

2008-04-27T16:14:00.000-07:00

I've been a fan of the Neurodiversity.com website since shortly after the diagnosis of my son. Instead of emotional rhetoric and pleas for therapies that rendered the providers of said therapies wealthier than the rest of us, neurodiversity.com compiled an exhaustive collection of articles covering every possible aspect of autism...but with a difference. Autism wasn't a tragedy. It simply was. A difference? Yes. A scourge? Not at all. This view was the first to lend me reassurance that life with Jakie was going to be good. I'm glad to see that the media is giving Kathleen Seidel her due. She has provided a great and reliable resource of materials for parents of children with autism, as well as a voice for those WITH autism.

AUTISTIC CONJECTURE OF THE DAY
Neurodiversity.com

A forceful voice in autism debate
Mother's site battles mercury theories

By Margot Sanger-Katz
Monitor staff
April 27, 2008

Kathleen Seidel is not a doctor. She's not a medical researcher. She's not an educator. She's not a lawyer. But the 52-year old Peterborough woman, armed with a degree in library science and a healthy sense of outrage, has become one of the leading voices in the public debate about a possible link between autism and vaccines.

Seidel's website, neurodiversity.com, is a clearinghouse for autism-related literature, and her attached weblog has become the site of an impassioned and thoroughly researched campaign against a group of scientists and lawyers who promote the theory that childhood vaccines cause the developmental disorder.

For Seidel, who guards her family's privacy but says she has a child with an autism spectrum diagnosis, the scientific evidence disputing their claims is overwhelming. A series of conclusive reports from government scientists have found no connection between autism and a mercury-based preservative once contained in vaccines. And Seidel said that her own family's experience has further cemented her belief that the disorder has a strong genetic component.

But those studies haven't persuaded a significant number of parents who believe that their children were poisoned by vaccines and suspect the U.S. government of denying its culpability. Their views are taken seriously. Nearly 5,000 are involved in a massive legal action to get compensation for their children, and many politicians and medical commentators stand behind the mercury poisoning theory. Among those who believe that mercury might cause autism are Sens. Hillary Clinton, John McCain and Barack Obama.

Seidel believes that the propagation of the theory causes many harms: It traumatizes parents, who believe their children have been poisoned and must be fixed; it harms children, who are subjected to medically unnecessary treatments designed to remove mercury from their bodies; it discourages vaccination, leaving children vulnerable to deadly diseases; and it distracts autism activists and researchers from the work she feels is most important.
"There's been a lot of energy, a lot of attention that been focused in an area that's not going to help disabled kids," Seidel said.

'1,000 percent'

Seidel describes herself as a "1,000 percent kind of person," who pours herself into her research and writing projects, generally spending about 30 hours a week on her website. That intensity is evident in her blog, where many posts run more than 5,000 words and contain quotations from medical journals, court documents and message groups where parents of children with autism share treatment experiences. She has made Freedom of Information requests for documents and sifted through historic archives on legal databases.

"I inhaled the all the documents. I exhaled all the documents," Seidel said, describing one of her recent posts.

Seidel, who is married and has two teenaged children, has worked as a children's librarian and as an internet entrepreneur. In recent years, she has not had a full-time job, splitting her time between caring for her children, curating her website and taking college courses in paralegal studies. During a recent interview, she wore a floppy black hat over her dark frizzy hair and a T-shirt that said: "What we need more of is science."

Science hasn't settled the question of what causes autism, but it has largely ruled out the possibility that a mercury-based preservative called Thimerosal, used in childhood vaccines until 2001, is to blame. After a series of epidemiological studies, the Centers for Disease Control and Prevention, the Institute of Medicine, and the World Health Organization all agree that the evidence doesn't support the theory.

Recent studies indicate that about one in every 165 children has an autism spectrum diagnosis, meaning that they have problems with social interaction, language and repetitive behaviors. The disorder is described as a spectrum because cases range in severity. Some people with autism are able to succeed in school and live independently as adults. Others have persistent physical and behavioral problems and are never able to speak. Research suggests that the rate of autism diagnoses has not declined since Thimerosal was removed from vaccines.

Seidel's writing has focused on the group of researchers and lawyers who remain wedded to the vaccines-cause-autism theory, and her blog includes accusations of ethical lapses, plagiarism, conflicts of interest and inaccurate citation in their work.

Advocates and fans say her exhaustive research sets her apart and makes her blog a must-read for those who care about the scientific, legal and political swirl surrounding autism.

"She is the Erin Brockovich of autism spectrum disorders," said Irving Gottesman, a psychiatry professor at the University of Minnesota Medical School who studies the causes of autism and is convinced that there is no vaccine link. Gottesman compared Seidel's investigative work to what he'd expect from a research team of several graduate students working under a professor. "Amazing," he said, for an amateur.

But critics are suspicious of Seidel's passion and the volume of her work. In interviews, several advocates raised the possibility that Seidel is being secretly paid by pharmaceutical companies, an allegation Seidel denies.

Those suspicions may have fueled a recent legal attempt to look inside her books. In March, Seidel was subpoenaed and asked to produce all of her business records and communications with sources, as part of a lawsuit against a pharmaceutical company. Seidel fought the subpoena and won, but she said that the legal skirmish was an unpleasant reminder that the people she investigates may try to retaliate. Clifford Shoemaker, the lawyer who ordered the subpoena, did not return a phone message.

"When it comes down to it, this is a lawyer in Virginia trying to shut me up because some of what I write doesn't make them look that good," she said.

Latest crusade

Seidel's most recent crusade has been against a group of autism researchers and lawyers who she believes have strong economic motives to promote the vaccine-autism theory.

She began the project after reading a 2006 article in the Monitor, which described the alternative medical treatments that a Concord couple were trying on their autistic child. The story contained a reference to a possible testosterone-blocking therapy. That mention piqued Seidel's interest.

"I read the article, and I just started doing my homework and never stopped," she said.

What she found was that the testosterone treatment involved a drug called Lupron, typically used by oncologists to treat advanced prostate cancer and by prisons to chemically castrate sex offenders. The drug interferes with the body's production of sex hormones, and its manufacturer documents a series of side effects, including injection site injuries, decreased white blood cell counts and osteoporosis.

On parents' message boards, she found an ever-growing number of posters who said they were trying the treatment on their children, both boys and girls. The doctor providing the therapy was Dr. Mark Geier, a Maryland-based geneticist who, with his son, David, has written many of the epidemiological papers most often cited by mercury causation believers. (An Institute of Medicine report disputing the link described the Geiers' work as "uninterpretable.")

According to early published statements by the Geiers, Lupron works in autistic children by preventing a chemical reaction between testosterone and mercury that makes it difficult for them to purge the metal from their bodies. No laboratory science has been done to establish that biochemical phenomenon, but in an interview, Geier said he began testing his theory in patients after a parent begged him to give Lupron to her autistic son.

"We finally decided we're going to try it," Geier said, describing his discussions with the child's doctor. "We were arguing about who was going to give the shot."

As word spread, more parents signed their children up for the treatment, which involves daily injections and frequent blood tests. Geier said he's currently treating about 500 patients with good results. Most of the children have become less violent, more verbal and happier, he said. He and his son have begun documenting those trends in a series of journal articles.

Reading about Lupron made Seidel mad.

"They're talking about experimenting on disabled kids," she said. "Disabled kids are among the most vulnerable people on the planet."

Thus began a series of posts examining the Geiers' research and their backgrounds. Each one outlined a new accusation against the father-son team. In one, she found that one research paper had given David Geier a title he hadn't earned. In another, she examined the review board designed to police the ethics of the Geiers' studies: Its members included Mark and David Geier, Mark Geier's wife, a vaccine injury lawyer, and the mother of the first Lupron patient. One post alleged that the Geiers had mischaracterized other scientists' research cited in their papers. Another suggested that a patent application for the treatment constituted a conflict of interest that the men should have disclosed. One compared passages from the Geier's work to a draft article prepared by CDC scientists and accused them of plagiarism.

For his part, Geier said he wasn't that troubled by Seidel's work, but he described her as "vicious."

"To go after us and call up universities and take every single paper that we write and to write every single editor and say, 'these guys are crooks,' " Geier said. "I don't understand."

Geier answered each of Seidel's charges. The inaccurate title was the result of an editing error. The review board list she saw was a preliminary version, not the actual board. The patent is not designed to make money. The similarities between the papers are not plagiarism.

"I don't know, maybe she's an English teacher," Geier said. "That's done in science. I'm sorry, that's not exactly criminal."

An expert witness?

As she began to examine the Geiers' research, Seidel also looked into their professional history. She said she was surprised by the number of times Mark Geier has testified as an expert witness in vaccine lawsuits.

Geier said he's appeared about 100 times in the special court for vaccine injury cases, a legal venue that he said he helped establish. Unlike most areas of medicine, where injured patients sue for damages in civil court, the federal Department of Health and Human Services has set up a special system for patients harmed by vaccines.

In the Vaccine Injury Compensation Program, patients are held to a much weaker standard of proof than the one used in traditional courts. They are judged by "special masters," instead of judges, and the court reimburses the plaintiff's legal fees, whether he wins or loses. The system, which is funded by a 75-cent tax on all vaccines, is designed to make it easy to bring claims and likely that injured patients will get relief. If patients are dissatisfied with the outcome, they can then go to the civil court system.

Seidel said she endorses the system and believes that patients legitimately harmed by vaccines deserve compensation for their injuries. But she also believes that the system has little to dissuade unscrupulous lawyers from recruiting clients with flimsy claims.

"The economic motives for filing vaccine injury claims are extreme, because you don't even have to win," she said.

Geier's frequent testimony led her to Clifford Shoemaker, who has been bringing vaccine injury claims since the beginning of the vaccine court, and is involved in a lawsuit brought by the family of Geier's first Lupron patient. Shoemaker's website is full of articles claiming the mercury-autism link.

"Mercury is probably the second most toxic substance in the world," reads a front-page entry in red letters. "We worry about ingesting it in the fish that we eat. And yet for more than a decade, we injected it into our babies."

Shoemaker had a recent high-profile success, when one of his autistic clients was separated from the thousands that have been aggregated by the court and given an award that was made public in March. The Department of Health and Human Services conceded last fall that vaccines may have harmed 9-year-old Hannah Poling of Athens, Ga., by exacerbating a pre-existing mitochondrial disorder and causing brain damage.

In a recent posting, Seidel combed legal archives for public records on Shoemaker's vaccine cases. She found that between June 2006 and March 2008, he had won 7 cases and lost 15. Overall, he earned more than $580,000. Several cases made mention of Geier's expert testimony, she wrote. The posting concluded, "To be continued."

Seidel received the subpoena two days later.

'It's also their business'

When Seidel looks at the world of autism, she sees disabled children, frustrated parents and marketers eager to make a buck. In this last category, she puts many purveyors of alternative medicine, who promise autism cures through herbs, creams and foil-lined hats; clinicians who often won't accept insurance for providing these unconventional therapies; and lawyers like Shoemaker, who bring lawsuits against vaccine manufacturers.

"This is their activism. This is their commitment. But it's also their business, some of them," she said.

Seidel said she feels sympathy for many parents who disagree with her, who she understands are struggling with the difficulties of raising disabled children in a world that does not provide sufficient support. For the most part, she views them as victims of opportunistic lawyers and marketers, who have deliberately whipped up an anti-vaccine frenzy to help their businesses.

"Many are as passionate and in some ways as principled as I am," she said, pointing to the extensive campaigns led by parents' groups to eliminate mercury from vaccines, medicines and power plant emissions.

But she also thinks that advocates of mercury causation theories are wrong and finds some of their tactics distasteful. As a parent of an autism spectrum child, she said, she's offended by statements that suggest that autistic people are somehow damaged or less than human.

Her site's name, Neurodiversity, is a nod to a larger way of thinking about autism, as one of several ways that humans can have their brains wired. Seidel wants people to respect autistic individuals for their differences, rather than reject them as contaminated.

She recalls that an early spur to activism came when she heard that Boyd Haley, a chemistry professor at the University of Kentucky who believes mercury causes autism, had described the increase in autism diagnoses as "an epidemic of mad child disease."

"My thought was: How dare you make up a term like that to talk about people," she said. "My second thought was: If you had any confidence in your science, would you feel the need to stoop so low?"

But Seidel's critics often accuse her of the same type of negative hyperbole.

"Kathleen is hurting people. She's not just disagreeing with us, she's going after people," said Amy Carson, the founder of Moms Against Mercury, a group that is trying to eradicate mercury from vaccines. Carson said that her autistic child is sick, and mercury-eliminating treatments have helped him. "She's like a pitbull when she is going after someone. She takes hold of them and doesn't let go."

Seidel didn't stop at examining the Geiers' publishing history on her website; she also began sending letters to journal editors and calling the legal departments of pharmaceutical companies. In those communications, she expressed her view that the Geiers are ethically compromised and asked why the institutions supported their work. According to Wikipedia discussion records, Seidel's husband, Dave, repeatedly revised an entry on Mark Geier in the online encyclopedia.

Mark Geier said that members of his review board have received threatening phone calls from Seidel's readers after she published their names. He also said that he's aware of other autism researchers whose jobs had been threatened by her activism.

The recent subpoena has done little to dim Seidel's enthusiasm for a good story or quash her anger about possible exploitation of children.

"It's geeky and specialty, but at this point, I love it - the joy of a scoop," she said.

Yesterday, she posted her newest entry, a look at a New Mexico-based alternative medicine practitioner who was promoting a veterinary medicine as a possible autism cure.

"If you go to the supper market and buy cat food and eat it yourself, no one is going to stop you from eating cat food. It is not against the law to eat cat food," Dr. Kenneth Stoller wrote in a message board posting she quoted.

But she isn't finished with Shoemaker yet.

"He knows what 'to be continued' means," Seidel said.

Milk - it does a body good???

2008-04-21T14:24:00.001-07:00

This Science Daily report is nearly 9 years old, and promotes the theory that proteins in milk may be linked to schizophrenia and autism. Not sure what has become of this line of reasoning in the last nine years, but suspecting metabolic/digestive issues is certainly an underpinning of the GFCF diet that many families adopt.

AUTISTIC CONJECTURE OF THE DAY
University of Florida Researchers Cite Possible Link Between Autism, Schizophrenia And Diet

ScienceDaily (Mar. 17, 1999) — By Melanie Fridl Ross

GAINESVILLE, Fla.---Findings from two novel animal studies indicate autism and schizophrenia may be linked to an individual’s inability to properly break down a protein found in milk, University of Florida researchers report in this month’s issue of the journal Autism.

The digestive problem might actually lead to the disorders’ symptoms, whose basis has long been debated, said UF physiologist Dr. J. Robert Cade, cautioning that further research must take place before scientists have a definitive answer. When not broken down, the milk protein produces exorphins, morphine-like compounds that are then taken up by areas of the brain known to be involved in autism and schizophrenia, where they cause cells to dysfunction.

The animal findings suggest an intestinal flaw, such as a malfunctioning enzyme, is to blame, says Cade, whose team also is putting the theory to the test in humans. Preliminary findings from that study – which showed 95 percent of 81 autistic and schizophrenic children studied had 100 times the normal levels of the milk protein in their blood and urine – have been presented at two international meetings in the past year but have not yet been published.

When these children were put on a milk-free diet, at least eight out of 10 no longer had symptoms of autism or schizophrenia, says Cade, a professor of medicine and physiology at UF’s College of Medicine and inventor of the Gatorade sports drink. His research team includes research scientist Dr. Zhongjie Sun and research associate R. Malcolm Privette.

“We now have proof positive that these proteins are getting into the blood and proof positive they’re getting into areas of the brain involved with the symptoms of autism and schizophrenia,” Cade said.

More than 500,000 Americans have some form of autism, according to the Autism Society of America. The developmental disability typically appears during the first three years of life and is characterized by problems interacting and communicating with others. Many individuals exhibit repeated body movements such as hand-flapping or rocking and may resist changes in routine. In some cases, they may display aggressive or self-injurious behavior.

Schizophrenia is noted for disturbances in thinking, emotional reaction and behavior and is the most common form of psychotic illness. More than 2 million Americans suffer from it, according to the National Institute of Mental Health. People with schizophrenia often hear internal voices not heard by others, or believe others are reading their minds, controlling their thoughts or plotting to harm them. In addition, their speech and behavior can be so disorganized that they may be incomprehensible or frightening to others.

In the UF studies, researchers injected rats with the protein beta- casomorphin-7, one of the key constituents of milk and the part that coagulates to make cheese. They then observed their behavior and later examined brain tissue to see whether the substances accumulated there.

Beta-casomorphin-7 was taken up by 32 different areas of the brain, Cade said, including sections responsible for vision, hearing and communication.

“This could explain several of the things one sees in autism and schizophrenia, such as hallucinations,” he said. “If part of the brain puts out a false signal because of casomorphin, it could result in the person seeing something that’s not really there; either a visual or auditory hallucination could occur.

“There are a whole number of behaviors that the rat has after beta-casomorphin-7 that are basically the same as one sees in the human with autism or schizophrenia,” he added. “If we ring a bell beside a rat’s cage, it normally looks up to see where the noise is coming from. But the rats after beta-casomorphin-7 didn’t do that – they were completely oblivious to the bell-ringing above them. This struck us as interesting because many mothers of autistic children comment that they seem at times to be totally deaf -- they talk to their children and they just don’t seem to hear them.”

Researchers suspect the process begins in the intestine, where the body absorbs the protein when a person eats foods containing it.

“We think this process is linked to the production of antibodies in the gut when you eat something you’re sensitive to,” Cade said. “Both schizophrenics and autistics have a high incidence of [certain] antibodies, and a high incidence of diarrhea, which points to an intestinal disorder. So we think that with autism and schizophrenia, the basic disorder is in the intestine, and these individuals are absorbing beta-casomorphin-7 that they normally should break down in the body as amino acids, rather than peptide chains up to 12 amino acids long.”

--------------------------------------- Recent UF Health Science Center news releases are available at http://www.health.ufl.edu/hscc/index.html

The UF Health Science Center topic/expert list is available at http://www.health.ufl.edu/hscc/experts.html

---------------------------------------

Adapted from materials provided by University of Florida.

Preemies and Autism

2008-04-10T22:44:00.000-07:00

25% of all micropreemies show signs of autism. That is an amazing statistic...and one that might account for much of the perceived "epidemic" of autism, as incredible gains have been made in helping the tiniest of infants to survive in the last few decades. Infants that would have died now survive along with the autism their birth circumstances *may* have helped to bring about. While Jakie was a preemie, he was no micropreemie, and weighed a respectable 5 pounds 14 ounces at birth. Given that he was a twin, that is even more respectable. Nonetheless, birth stress once again resurfaces as part of the autism etiology puzzle.

AUTISTIC CONJECTURE OF THE DAY:
Very-Low-Birth-Weight Infants More Likely to Show Early Signs of Autism

Marlene Busko Medscape Medical News 2008.
April 4, 2008

A recent study found that, among 91 toddlers who had been born prematurely and weighed from 1 pound to 3.28 pounds (460 to1490 g) at birth, 25% screened positive for early signs of autistic features.

This is the first study to document a high prevalence of early autistic features in survivors of extreme prematurity, the group, led by Catherine Limperopoulos, PhD, from McGill University, in Montreal Quebec, writes.

The toddlers were screened at a mean age of 21.9 ± 4.7 months using the Modified Checklist for Autism in Toddlers. The findings suggest that "routine, systematic screening of very-low-birth-weight infants for early signs of autism is important," Dr. Limperopoulos told Medscape Psychiatry. "It's [also] important to perform formal diagnostic autism testing in those who test positive to confirm whether this initial positive screening does in fact translate into autism spectrum disorders," she said, noting that the team is currently performing these definitive follow-up tests for autism in this cohort.

The study looked at an extremely high-risk subgroup of premature infants with a gestational age range of 23 to 30 weeks (and did not include premature infants having a gestational age of 31 to 37 weeks), she added. The study is published in the April issue of Pediatrics. Advances in neonatal intensive care have dramatically increased the survival of preterm infants, but there is an increasing population of very-low-birth-weight children who experience significant disabilities in socialization, communication, and behavior, the group writes.

The study was prompted in part because the team had clinically observed that some very preterm infants displayed unusual social behaviors at follow-up visits. In addition, validated screening tests to detect early signs of autism have now become available.

Recent studies have demonstrated benefits from intense early interventions, and the American Academy of Pediatrics is endorsing autism screening for all children by age 2 years, Dr. Limperopoulos noted. The team aimed to perform autism screening tests on toddlers who had been born prematurely and had a very low birth weight and to identify risk factors associated with a positive screening result.

They studied 91 consecutive preterm infants with a birth weight of less than 3.3 pounds (1500 g). When the infants were between 18 and 24 months old, adjusted for prematurity, they were tested using the Modified Checklist for Autism in Toddlers (a 23-item yes/no parent report checklist to detect early signs of autism at 16 to 30 months).

The children were also tested using the Child Behavior Checklist for ages 1.5 to 5 years (a caregiver questionnaire about behavior and emotional problems in young children) and the Vineland Adaptive Behavior Scale (a measure of a child's functional status in a wide range of skills).

One-Quarter Screened Positive A total of 23 of the 91 infants (25%) had a positive score on the Modified Checklist for Autism in Toddlers screening test. Having abnormal scores on this test correlated highly with having internalizing behavioral problems according to the Child Behavior Checklist and having socialization deficits according to the Vineland Adaptive Behavior Scale.

The infants were more likely to screen positive for early signs of autism if they had the following risk factors: male sex, abnormal MRI studies, lower birth weight, lower gestational age, maternal infection, maternal acute intrapartum hemorrhage, and more severe illness at birth. What Does this Mean?

"Early autistic behaviors seem to be an under recognized feature of very-low-birth-weight infants," the group concludes. "The results from this study suggest that early screening for signs of autism may be warranted in this high-risk population, followed by definitive autism testing in those with positive screening results."

Larger, prospective studies are needed to corroborate these findings and to determine to what extent this initial positive screening test result is a transient or emerging finding during a time of critical development, Dr. Limperopoulos added.

This work was supported by grants from the National Institutes of Health, the LifeBridge Fund, the Caroline Levine foundation, the Trust Family Foundation, and the Canada Research Chairs Program.
Pediatrics 2008;121:758-765. Abstract