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Saturday, May 31, 2014

Special Education Accommodations Infographic

From eLearningInfographics.com

May 29, 2014

In order to make the general education curriculum accessible for  special education students, we implement many classroom supports, including accommodations and modifications. This Special Education Accommodations Infographic provides examples of accommodations for special education students in math, reading, writing, homework and tests, and organization.

The Essence of Sensory Processing Disorder

From the Washington Post Blog "On Parenting"

By Marguerite Kelly
May 21, 2014

Question: My son was diagnosed with ADHD when he was 7, and is now a junior in high school.

Because of his attention difficulties, we constantly have to remind him to do his homework, his chores or whatever he needs to do. I fully understand his challenges, so I follow the advice of his doctors pretty well.

There is one thing that really bugs me, however: My son simply won’t take a shower without a lot of prodding. I’m not asking him to shower every day, but why can’t he take two showers a week without making such a big fuss?

I had hoped that a budding interest in girls would make my son have better hygiene, but that hasn’t happened yet. Although he does use a deodorant — when he’s reminded to use it — he tells me that he doesn’t know why he has to take a shower, too.

At what point do I stop saying anything about it and just let him be stinky?




Answer: You shouldn’t let your son smell bad, because that will affect his ability to make and keep friends.

You have to insist that your son catch up with the times, and with the boys in his class. Your son acts the way a young teenage boy usually acts: He was probably shocked when you wanted him to take a shower, to wash the back of his neck and to use a deodorant. Sooner or later he’ll realize that you were right: He does smell like Cologne du Goat.


Almost all young teenage boys tiptoe into a good hygiene plan between the sixth and ninth grades, not when they’ve reached their junior year in high school. Because of this delay, it sounds like your son may actually have sensory processing disorder, especially if he has always been bothered by the tags in his shirt and the seams in his socks.

SPD children can have super-sensitive skin (or tactile responsivity, as it’s called in the trade) which can cause them to be seriously bothered by things like showers, which send irregular needles of water onto their skin.

Fortunately, an occupational therapist can check your son for this condition, and if he has it, she can help him get over it, as long as he does the daily exercises she will prescribe. This will help him relax, too.

You could also have him take baths instead of showers. If you don’t have a bathtub, buy a cheap plastic bin, then put it in the shower stall and fill the bin up with water. Have your son sit in the bin, where he will feel enclosed and safe. In time, he should be able to tolerate a shower as well as a bath.

To learn more about sensory processing disorder — a condition that was discovered about 40 years ago — you’ll want to read two fine books on the subject: the revised edition of The Out-of-Sync Child by Carol Stock Kranowitz (Perigee; $16) and Raising a Sensory Smart Child by Lindsey Biel and Nancy Peske (Penguin; $17). If this is your son’s problem, the more you and your son know about SPD, the sooner he will get over it.


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Send questions about parenting to advice@margueritekelly.com.

Read a transcript of a recent live Q&A hosted by Kelly at washingtonpost.com/advice, where you can also find past Family Almanac columns. Her next chat is scheduled for May 29th.

On Parenting newsletter: Interested in receiving parenting news by e-mail? Sign up at washingtonpost.com/parenting.

Cognition and Behavior: Attention Deficit Skews Responses

From SFARI.org
The Simons Foundation Autism Research Initiative

By Kate Yandell
May 23, 2014

People with autism react to stimuli at an uneven pace, sometimes responding rapidly and sometimes after a lag, but only when the group does not exclude the subset of individuals who also have attention deficit hyperactivity disorder (ADHD), according to a meta-analysis published 13 March in the Journal of Child Psychology and Psychiatry.
Co-occurring ADHD may explain the variability in response time among people with autism, the study suggests.


Researchers have speculated that people with autism may show irregular reaction times, in keeping with other commonalities between autism and ADHD. Women with ADHD are 2.5 times more likely than controls to have children with autism, and the two disorders may share genetic risk factors. Nearly 30 percent of children with autism also meet the diagnostic criteria for ADHD...

Read the entire article HERE.

Friday, May 30, 2014

Treating Babies with Stimulants is Reckless

From MedPageToday's Blog "KevinMD.com"

By Allen Frances, M.D.
May 27, 2014

How crazy is it to drug babies?

It was shocking enough to discover that 20% of teenage boys get labelled as having ADHD, and 10% are on stimulant medications for it. That 11% of all kids aged 4-18 get the diagnosis of ADHD, and 6% the drugs. That stimulant prescriptions and pharma profits are skyrocketing all around the world. And that ADHD guidelines encourage making the diagnosis and starting the drugs in kids as young as four.

Then it got worse. An adventurous group of cowboy child psychologists invented a new and untested diagnostic category (with the ridiculous name, “sluggish cognitive tempo’”) that would be a wonderful target for additional inappropriate stimulant use.

It is also particularly outrageous that so many of the thought leaders promoting the excessive use of stimulants have such close ties with pharma. Honor dies where conflict of interest lies.


But the latest news tops all in raw shock value. The Centers For Disease Control and Prevention has just estimated that 10,000 U.S. toddlers, aged 2-3, are being given stimulant drugs for behaviors that have been mislabeled as ADHD. This falls outside the already overly inclusive guidelines that start kids at the too early age of four.

Treating babies with stimulants is based on no research, is reckless, and takes no account of the possible harmful long-term effects of bathing baby brains with powerful neurotransmitter drugs.

Many people thought I was being overly optimistic when recently I predicted that the ADHD fad had finally peaked and that we would gradually return to more appropriate levels of diagnosis (perhaps the previous 3% instead of the current 11%). My optimistic prediction was not based on naivete about pharma greed or physician carelessness.

My hopes rested on the possibility that there would be a backlash of parental and professional protest as it becomes clearer and clearer how absurdly overused is the ADHD diagnosis and the stimulant medication.

The CDC report will certainly fuel that outrage and help stimulate a backlash, but at what price to the babies?


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Allen Frances is a psychiatrist and professor emeritus at Duke University. He blogs at the Huffington Post.

Genes Impact Suspect Cortex Areas More as Youth Mature

From NIMH Daily Digest
The National Institute of Mental Health

May 20, 2014

Heritability maps may hold clues to delayed onset of mental disorders. 


The thickness of later evolving and maturing areas of the brain’s outer mantle, or cortex, shows increasing genetic influence as the brain develops in childhood and adolescence, NIMH researchers have discovered.

“The heritability of cortex thickness increases gradually throughout late childhood and adolescence, with three more uniquely human areas, including circuitry supporting language and thinking, emerging as the most genetically influenced,” explained Jay Giedd, M.D., of the National Institute of Mental Health. “These same increasingly heritable brain areas are also most implicated in mental illnesses, which typically emerge in late adolescence. So the findings may provide insights into the workings of gene-by-environment-by age interactions that underlie the perplexing delayed onset of these disorders.”

Magnetic resonance imaging (MRI) scans revealed the ebb and flow of heritability and genetic variability of cortex thickness in children and teens as they grew up in the largest study of its kind.

Giedd, J. Eric Schmitt, Ph.D., and colleagues reported on their findings during the week of April 21, 2014 in the journal Proceedings of the National Academy of Sciences.

Prior to the NIMH study, knowledge about genetic influence on cortex development was limited to comparisons of cross-sections of youth at different ages. Hints that evolutionarily newer cortex areas are more influenced by genetics first emerged in an earlier phase of the NIMH study, which tracked a smaller number of youth, who were each scanned at just two developmental time points. To gain a finer-grained picture, Giedd’s team scanned 792 twins and their siblings, each at up to 8 time points as they grew up, yielding nearly 82,000 measures of cortex thickness, culled from 1,748 MRI scans.

Thickness of evolutionarily newer areas of the frontal, temporal and parietal lobes – which also are among the latest cortex areas to mature developmentally – emerged as the most genetically influenced. Most genetically influenced changes in thickness happen before puberty, with genetic variability stabilizing after puberty. Impact of environment on cortical thickness waned through childhood, and sex differences were relatively minor.

While regionally specific, the patterns of genetic change occurred in a back-to-front wave, similar to the pattern of gray matter density maturationreported by the NIMH researchers nearly a decade ago.

“The ever changing effects of genetics on brain structure echo those of recently reported findings from the Brainspan Atlas of the Developing Human Brain, underscoring the importance of genes expressed at particular developmental stages,” said Giedd.


Upper: Later evolving and maturing brain areas, which also are those
most implicated in mental illness, showed gradually increasing
heritability (red), peaking by late adolescence – the age-of-onset for
most mental disorders. Lower: By contrast, genetic variance (red)
gradually decreased over the same age range, in a back-to-front wave.
Source: Jay Giedd, M.D., Eric Schmitt, Ph.D., NIMH Child Psychiatry Branch

Thursday, May 29, 2014

‘Tiger’ or ‘Hands-Off’ Mom? Both Types Motivate

From Futurity.org

By Clifton B. Parker
May 23, 2014

In 2011, Yale law Professor Amy Chua provoked a cultural clash with a Wall Street Journal article, “Why Chinese Mothers Are Superior,” that advocated a strict approach described as “tiger parenting”—a style common in East Asia. The article suggested Western-style parenting was too permissive.

In a backlash to the article, critics accused Chua of over controlling her children in her quest to make them succeed.

A new study shows even if the Asian and Western styles differ radically, they represent two paths to the same destination.

“These findings underscore the importance of understanding cultural variation in how people construe themselves and their relationships to others,” writes Alyssa Fu, a doctoral student in psychology at Stanford University and lead author of the study that is published in Personality and Social Psychology Bulletin.

“While European American parents give their children wings to fly on their own, Asian American parents provide a constant wind beneath their children’s wings.”

Fu says she and Hazel Markus, professor of psychology, “were interested in finding out how interdependence could be a motivating factor. The idea was to compare the Asian-American cultural context to the European American one.”




‘Describe Your Mother’

In the Asian-American family model, children learn the value of being interdependent with one’s close others, especially one’s mother. In contrast, European-American families tend to emphasize that the person is and should be independent, even from one’s mother. The focus is on developing self-esteem and self-efficacy in the child.

In four separate studies involving 342 students from a Northern California high school, the researchers examined “underlying models of self” and sources of parental motivation and pressure. The students were asked for open-ended descriptions of their mothers—”describe your mother in a couple of sentences.” They also answered questions about how connected they felt with their moms as well as how much pressure they received.

For example, they asked students to directly rate how much pressure they experience from their mothers. Then, to assess whether students perceive this pressure by mothers as negative, the researchers asked participants to rate how much they feel supported by their mothers. And they examined the correlation between students’ perception of maternal pressure and feelings of maternal support.

In two of the experiments, they examined how Asian-American and European-American students thought about their moms after they experienced failure in a word puzzle task that required them to think about themselves and others who are close to them.


Seeing Mom Differently

The research findings suggest that Asian Americans and European Americans truly see moms differently.

For example, Asian-American high schoolers were more likely to talk about their relationships with their mothers than were European Americans. Asian Americans more often noted that their moms helped them with homework or pushed them to succeed.

On the other hand, European-American students were more apt to talk about their mothers as separate individuals—describing their appearance or their hobbies, for example.

Asian-American students experienced more interdependence with their mothers and pressure from them. But the pressure does not strain their relationships with their mothers as much as it does with European Americans, the study shows.


Mother's Energy

“Following failure, Asian-American students compared with European American ones are more motivated by their mothers, and are particularly motivated by pressure from their mothers when it conveys interdependence,” or the feeling that mom is on their side in challenging times,” the study reports.

On the other hand, Fu says, when European Americans experience failure, “It can cut you to the heart. Then, it’s up to you to pick yourself up by the bootstraps and move on.”

In Asian-American families, mothers are more often physically near their children, reminding them to do their homework—and children find energy in their mother’s pressure. Thus, at the point of failure, when they were prompted to think of their mothers, they bounced back quicker than European Americans.

Asian-American mothers and children alike see it as the mother’s duty to help their children to succeed, even if that means pushing them to do what they don’t want to do. “The interdependent relationship between mothers and their children is what allows pressure from mothers to be motivating,” Fu says.


Overlapping Selves

One defining trait of “tiger moms” is that they do not simply give orders to their kids without getting involved, Fu says. “Tiger moms throw themselves into everything that their children are doing. And when Asian-American kids see themselves as really connected with their mothers, they can benefit from their mother’s pressure.”

How interdependent Asian Americans feel with their mothers—”how much they feel like their selves overlap,”—predicts their persistence, Fu says.

“In other words, they work harder the more interdependent they feel with their mothers, but only when they are reminded of their mothers’ interdependence with them.”


‘Calm the Clash’

When it comes to motivating a child who is struggling in school or outside of it, Fu and Markus say there is merit in both approaches.

“The results of these studies can calm the clash over the role of parental involvement in academic achievement. They show that Chua and her critics can both be right,” they say.

Fu says she wants to explore how interdependence can be stronger and more effective in the European American context. The two cultures can learn from each other.

“A sense of self as independent and a sense of self as interdependent can both be useful in motivating students and encouraging them to persist,” Fu says. “These are psychological tools that people can use to grow and achieve success.”

States Take Steps to Make Sure Kids Get Vaccinated before School

From Education Week
via the HuffPost Parents Blog

By Evie Blad
May 23, 2014

As outbreaks of preventable diseases have spread around the country in recent years, some states have been re-evaluating how and why they allow parents to opt their children out of vaccines required for school attendance.

Requiring vaccines before school admission has been a key component of a decades-long campaign that had nearly rid the United States of some of its most severe illnesses, from the measles to whooping cough, public-health experts say. But they also warn that broad "personal belief" exemptions that don't relate to a child's medical condition or a family's religious beliefs have made it too easy to bypass vaccines, poking a sizable hole in the public-health safety net.

While some parents act out of a sense of personal conviction, others do so simply because they don't have time to schedule an appointment, said Stephanie L. Wasserman, executive director of the Colorado Children's Immunization Coalition, an Aurora, Colorado group that seeks to increase vaccine coverage in the state.

"We want to close that convenience loophole," she said. "When you choose not to immunize, there are consequences not only to your child and your family; there are consequences to your community as well."


In this April 20, 2012, photo, Holly Ann Haley, 4, gets
vaccinations at the doctor's office in Berlin, Vt. Vermont
continues to be embroiled in a debate over ending the
philosophical exemption that allows parents to have their
kids skip the immunizations required for most children
to attend school. (Photo/Toby Talbot Associated Press)

Since 2011, Washington, Oregon, California, and Vermont have revised their personal exemption processes.

In Colorado--a state with one of the highest opt-out rates in the country and the most recent one to examine its vaccine-exemption policies--a bill passed this month would draw schools into the public health fight.

House Bill 1288, which has not yet been signed by the governor, will require schools to collect information about their vaccination rates and to provide it to parents upon request. The state's permissive school choice laws would allow parents to transfer their children--including immune-compromised children who are not able to be vaccinated—to schools with higher vaccination rates, advocates for the legislation said.

And making the information publicly available could hold schools accountable for enforcing existing laws and encourage them to promote vaccinations through efforts like school-based health centers and pop-up clinics at school registration events, Ms. Wasserman said.

"We think it fits in the education reform model that places parents in the role of making decisions based on quality," Ms. Wasserman said of the reporting requirement. "It's an innovative part of the bill, and other states are already taking a look at it."

National Picture

All states require a schedule of vaccines that a child must have before he or she can be enrolled in school. Every state allows exemptions from vaccines for medical reasons, and all but Mississippi and West Virginia allow exemptions for religious reasons, according to the Centers for Disease Control and Prevention in Atlanta.

Public health experts find the most fault with personal exemptions, also known as philosophical exemptions, which are in place in 19 states. Those exemptions typically allow parents to opt out of vaccinating their children by signing a one-time form and without disclosing a reason.

And the number of parents claiming such exemptions has grown over the last decade, with high concentrations of exemptions in states with especially permissive policies.

Some parents, including those who opposed tightening restrictions on Colorado's personal exemption, argue that it's their right to make medical decisions for their children, regardless of the reason.

The movement to opt out of all or some vaccines has spiked in recent years, in part because of scientifically unproven claims that vaccines are linked to autism and because of misinformation spread online, vaccine proponents say.

And as vaccines have been effective at largely wiping out the diseases they are designed to prevent, the public has grown less concerned about those diseases, Glen J. Nowak, the director of the Center for Health & Risk Communication at the University of Georgia in Athens said in a conference call with public-health advocates.

For some parents, that kind of progress tips the scale of concern away from illnesses and toward any possible side effects associated with the vaccines.

"One of the things that happens with low disease awareness is increased focus on risks" of vaccines, Mr. Nowak said.

In addition, immunization schedules have grown more complicated, and some people are resistant to any form of government mandate, Mr. Nowak said.

Waning 'Herd Immunity'

Data from the federal Centers for Disease Control and Prevention show that, in 2012, between 90 percent and 95 percent of kindergarten students in most states had received two doses of the measles, mumps, and rubella (MMR) vaccine. The data showed the same range of coverage for most states for the diphtheria, tetanus toxoid, and acellular pertussis (DTaP) vaccination.

By contrast, just 85.7 percent of Colorado kindergartners had received the MMR vaccine, and just 82.9 percent had the DTaP vaccination, the data show. Of the Colorado students whose parents claimed an exemption, 93 percent chose the personal belief exemption.

Vaccination rates that low fall below the threshold of what is required for what's known as "herd immunity" or "community immunity," which requires immunization rates of between 90 and 95 percent for most vaccines, Ms. Wasserman said.

A portion of every population is unable to be vaccinated because they are too young or because their immune systems are too fragile. Through "herd immunity," a critical mass of the population is immunized, helping to protect those without vaccines and to slow potential contagious outbreaks, according to the CDC.

Low immunization rates can directly affect schools, Ms. Wasserman said. In many states, public health officials have required unvaccinated students to stay home during outbreaks. In April, local health officials in Ohio warned parents that unvaccinated students may have to stay home for 25 days or longer if the region's mumps outbreak spreads into schools.


"By not having kids in seats, you're impacting their ability to have the instruction time and the teaching time," Ms. Wasserman said.

In Colorado, many students missed extended periods of school in 2012 and 2013 as the state faced a surge of cases of pertussis, or whooping cough. The state's health department reported 415 cases of pertussis in 2011, a number that grew to 1,494 in 2012 and 1,035 in 2013.

Public health officials blamed low vaccination rates and a change in the vaccine in the 1990s that made it less effective for some.

Other Approaches

States with permissive personal exemption policies have opted to amend them in recent years, rather than eliminating them all together. In 2011, Washington passed a bill requiring parents to obtain a doctor's signature before claiming a personal exemption. In 2012, California passed a similar law.

Under Oregon's law, passed last year, parents must now obtain a doctor's signature or complete an online education module before claiming a personal exemption.

Colorado's bill originally included a similar "informed exemption" requirement, but lawmakers amended that portion out of the bill after hours of emotional testimony from parents who oppose vaccinations and appeals from parents and medical professionals who support them.

Opponents called the medical counseling requirement "a re-education campaign," "brainwashing," and "propaganda."

The National Vaccine Information Center, a Sterling, VA-based organization "dedicated to the prevention of vaccine injuries and deaths," said that, "under the guise of public education," the bill "makes it legal for the state to brand a minority of citizens as intellectually or morally inferior and serves to harass and coerce citizens making health care decisions for their minor children."

After the amendments, the bill still would require the Colorado Department of Public Health and Environment to create a process for sharing and analyzing immunization data. It would also require the state's board of health to create an online education module that parents can consult for information about vaccines and to re-evaluate how frequently parents have to submit exemption forms.

Discussion groups assembled by the Colorado Children's Immunization Coalition to evaluate the state's policies supported requiring parents to reauthorize exemptions on a schedule that mirrors a child's vaccination schedule, Ms. Wasserman said.

This would give parents an opportunity to reconsider their decision and remind those who opted out for reasons of convenience that they still need to vaccinate their children, she said.

"People are often adopting this option without having a deeply held personal belief," she said of the personal exemption. "We wanted to close that convenience loophole and also offer opportunities to get science-based, research-based, credible information out there about the importance of vaccines."

A spokesman for Colorado Gov. John Hickenlooper, a Democrat, said last week that his office has not yet received the bill, and he will review it before signing it.

Wednesday, May 28, 2014

Supreme Court Rejects Bright-Line Test for Intellectual Disability

From DisabilityScoop.com

By Michael Doyle
McClatchyWashington Bureau

May 27, 2014

A closely divided Supreme Court on Tuesday struck down Florida’s strict IQ cutoff for determining inmate eligibility for the death penalty.

In a 5-4 ruling, the court concluded that the state’s rigid IQ cutoff of 70 “disregards established medical practice” and creates the “unacceptable risk” that an inmate with intellectual disability might be executed in violation of the Constitution.

“Our society does not consider this strict cutoff as proper or humane,” Justice Anthony Kennedy wrote.

The U.S. Supreme Court ruled Tuesday that states must take
into account a margin of error in IQ testing when determining
whether or not an individual has intellectual disability. (Shutterstock)

Instead, Kennedy and the court’s four liberal justices concluded, Florida must take into account other factors as well as the IQ testing’s standard error of measurement in evaluating intellectual disability. This is already the practice in many other states.

“By failing to take into account the (standard error of measurement) and setting a strict cutoff at 70, Florida goes against the unanimous professional consensus,” Kennedy wrote, adding that:

“...the flaws in Florida’s law are the result of the inherent error in IQ tests themselves. An IQ score is an approximation, not a final and infallible assessment of intellectual functioning.”

Freddie Lee Hall, the 68-year-old convicted murderer at the heart of the case decided Tuesday, has been on the state’s death row since 1978. He and an accomplice were convicted of murdering a 21-year-old pregnant woman and a Hernando County deputy sheriff.

The sixteenth of 17 children, Hall was “tortured by his mother and abused by his neighbors,” according to a 1993 dissenting opinion in the Florida Supreme Court. He had an IQ of 60 and was “functionally illiterate and has the short-term memory of a first-grader,” the dissenting opinion observed. In later years, though, Hall’s IQ was variously measured at 71 and 73.

Hall and Mack Ruffin Jr. were charged in the Feb. 21, 1978 murders of Karol Lea Hurst, a 21-year-old housewife who was seven months pregnant, and Hernando County Deputy Sheriff Lonnie Coburn.

The Supreme Court has previously decided, in a 2002 case called Atkins v. Virginia, that the execution of those variously described as having mental retardation or intellectual disability violates the Eighth Amendment’s prohibition against cruel and unusual punishment. The court left the definition up to individual states.

“No legitimate penological purpose is served by executing a person with intellectual disability,” Kennedy wrote in the decision issued Tuesday. “To do so contravenes the Eighth Amendment, for to impose the harshest of punishments on an intellectually disabled person violates his or her inherent dignity as a human being.”

Florida imposes a three-part test, which starts with a rigid requirement that the inmate score 70 or below on the IQ test. If the inmate scores below the cutoff number, the state also will assess for “deficits in adaptive behavior” and an onset before the age of 18.

In addition to the intelligence test score cutoff, Florida defines intellectual disability as a condition that appears in childhood and is accompanied by “deficits in adaptive behavior,” which essentially means the ability to live independently. By one count, more than a dozen other states use an IQ score of 70 as a cutoff point, giving the Supreme Court’s ultimate ruling potentially more significance.

In the 2002 case, called Atkins v. Virginia, a divided court first concluded that the execution of people with intellectual disability violated the Constitution’s Eighth Amendment protections against cruel and unusual punishment. The court’s 6-3 majority reasoned that “society views mentally retarded offenders as categorically less culpable than the average criminal.”

Conservative Justice Samuel Alito wrote a dissent, joined by Chief Justice John Roberts, Jr., as well as Antonin Scalia and Clarence Thomas.

ASAN Statement on Media Claims Linking Autism and Violence

From ASAN
The Autism Self-Advocacy Network

May 24, 2014

Recent media reports have attempted to suggest a link between individuals on the autism spectrum and violent behavior. The Autistic Self Advocacy Network is concerned by the proliferation of misinformation which may contribute to increased stigma and discrimination against Autistic Americans.

Autistic people are no more likely than any other group to commit acts of violence. People with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. There is no link between autism and violent crime. Similarly, there is no link between psychiatric disability and violent crime.

Attempts by pundits to stigmatize members of the autistic and disability communities due to the diagnosis or possible diagnosis of someone who commits a violent act are inappropriate and out of step with our country’s shared values. We are a nation committed to equality of opportunity and non-discrimination. Despite a long history of coming short of those goals, Americans continue to work towards a world in which everyone can enjoy full inclusion and equality.

As we have in the past, we should come together to mourn tragedies when they occur, hold responsible only those who have committed them and fight against any attempt to exploit such incidents to advance an agenda of bigotry and prejudice. We urge the media to be responsible when reporting on tragic acts of violence occurring in our communities.

3 in 10 Children in the Juvenile Justice System Have Learning Disabilities

From NCLD.org
The National Center for Learning Disabilities

By Meghan Casey
NCLD Policy & Advocacy Associate

May 25, 2014

It’s no secret that students with disabilities are suspended, expelled and involved with the criminal justice system at a higher rate than their peers. But the numbers might be higher than you think.

Did you know that 1 out of every 2 students with learning disabilities (LD) has been suspended or expelled? Or that more than half of all people with LD will have some type of involvement with the criminal justice system within eight years of leaving high school?



The numbers are startling, and you can get even more facts from our State of Learning Disabilities 2014.

Now we have more information about how big this problem is. A new report recently highlighted what’s happening in juvenile justice facilities in the South. It states that 30 percent of kids in juvenile justice facilities have been diagnosed with learning disabilities. Yet only 22 percent are receiving special education services.

This means that many kids who need help are not receiving it. The fact is the justice system is not equipped to provide the education that all students deserve.

More kids becoming involved with the justice system means fewer kids graduating with a diploma. We can’t keep waiting to address this crisis. NCLD cares about this issue and is working on a plan so that we can make a difference. To stay updated on how we’re getting involved and working to end this problem, follow our public policy team on Twitter.

You can also sign up here to join our email list of 60,000 advocates across the country. Whatever you do, share this knowledge and spread the words to your family and friends. The more people who know and care, the more of a difference we can make.

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Meghan Casey is the Policy Research & Advocacy Associate at NCLD. She is part of the Public Policy and Advocacy team which implements NCLD’s legislative strategy in Washington, D.C., and advances government policies that support the success of individuals with learning disabilities in school, at work and in life.

Tuesday, May 27, 2014

Empathy Lessons: Training Police to Understand People with Mental Illness

From WBUR 90.9 FM's Blog "CommonHealth"

By Carey Goldberg
May 23, 2014

In a training exercise, Somerville Police Officer Eli Kim, left,
tries to book Somerville Officer Samir Messaoudi — playing
the role of a man with schizophrenia — while Cambridge Police
Officer Fred Cabral does the sound effects of voices
in Messaoudi’s head. (Cambridge Police Department)

Earlier this month, Somerville Police Officers Alan Monaco and Timothy Sullivan responded to a call about a fight between two young men. They found one of them, Mike, in an agitated state.

“He started flipping out — get your effing hands off me, don’t touch me!” Monaco recalled. “He was up and down, he would be screaming and yelling one minute, nice and talking and smoking cigarettes the next. We talked about what the issue is; he said the other kid said something detrimental about his mother, and his mother’s sick, and he spit in his face.”

Coincidentally, the two Somerville officers had just been in a training session on mental disorders — including Asperger’s, one of Mike’s diagnoses. So they knew people with Asperger’s can be hyper-sensitive about being touched and insensitive about how close to get to other people. Like Mike, who got far too close to the officers when he talked to them, right up into their faces.

“Normally for a police officer, if you invade our space, we have a safety zone where we don’t want people close to us,” Monaco said. “I would have pushed him away. I would have physically pushed him off me.”

But the officers thought pushing Mike back with their hands — their natural reaction — would backfire.

“I think in this case Mike would have reacted adversely,” Monaco said, “and he would have ended up in jail, where he didn’t need to be.”

“It also seemed to de-escalate Mike in a sense,” Officer Sullivan said. “He got to vent and calm down and talk to us in I guess what would be a normal voice for Mike, and it worked. … The class actually helped us a lot.”

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Listen to this story HERE.
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The class they took was part of 40 hours of training to create “Crisis Intervention Teams” that serve as a police department’s go-to group for mental health crises.

With a state Department of Mental Health grant of $168,000, the Massachusetts chapter of the National Alliance on Mental Illness is working to help bring that advanced training to more police departments around the state.

Crisis teams have been catching on around the country; earlier this month, the Connecticut Legislature passed a bill to ensure that all the state’s police officers get such training. The need has been rising: Cuts in mental health services over recent years mean that police are called upon to deal with growing numbers of people with severe mental illness, who often end up in jail instead of treatment.

“What we know is that at least 10 percent of all calls to 911 involve people having a psychiatric crisis,” said June Binney, director of the Criminal Justice Project at NAMI Mass., who oversees the training. “What we think anecdotally, from what we hear from police departments, is that number is really more in the range of 25-35 percent of all 911 calls related to people in a psychiatric crisis.”

State government figures show Massachusetts spends relatively little on police training compared to other states, Binney noted. And when it comes to mental illness, a lack of police training can pose real risks, she said.

“The consequences at worst can be very dire,” she said. “They could be people dying, they could be a person with a mental health problem who is fighting back and strong and may get hurt, and police officers are at a huge risk of getting injured in some of these encounters. So the skill set is really critical to keep the situation calm and keep the situation safe, first and foremost, and to avoid unnecessary arrests and get people the treatment they need.”

The training isn’t just classroom lectures. It’s acting out explosive situations in a simulation room with a giant interactive screen. It’s role-playing and practicing “de-escalation” of fraught encounters, responding calmly even when faced with yelling and aggression.

In one exercise, Cambridge Police Sgt. Fred Cabral played the role of a suspect who has schizophrenia, and Somerville Police Officer Eli Kim played the voices inside his head, talking into his ear through a rolled up piece of paper. Cabral had to answer some simple questions while he was being booked: Name, height, Social Security number.

But as he tried, Kim’s voice blared in his ear, reading from a script of typical auditory hallucinations: “How did you get to the police station? You must have done something wrong! I wonder what happened. You want to leave this place. You want to leave this place. You can’t leave until he leaves. Stop! Stop talking to the police. We want to leave. We want to leave! Why are you wasting your time?”

It was challenging, Cabral said afterward.

“They’re very simple questions but it splits your focus, and it’s hard to concentrate on what you’re being asked,” he said.

Kim — who played the auditory hallucinations — said the training could help police officers identify more with people who have mental illness. ”As opposed to before, we had very little, or basic, knowledge about what caused them to act this way,” he said.

Somerville Officer Samir Messaoudi, who played the booking officer, added, “It doesn’t do any good to bring someone to the cell block if we could direct them to the hospital and staff and we could actually help them and get them the medication or the treatment they need, versus making the arrest.”

David Fallon, Somerville’s deputy chief of police, says mental illness is not a problem “you can arrest your way out of.” But the training is about more than that, he said, and it’s important not just for Somerville but for “the policing profession as a whole.”

“It’s a very lofty goal, but you’re trying to teach officers empathy for people with mental illness, and that’s why I think that ‘Hearing Voices’ training was very important,” he said. “Officers need to have empathy today — that’s what society expects from officers and it’s what they deserve, and it’s what people need.”

If someone is caught in a psychiatric crisis, Fallon said, “They’re living in fear in our community. That’s important to us. We don’t want anybody living in Somerville living in fear. So we’re taking this training to heart.”

About a fifth of Somerville’s police officers went through this month’s training and several other towns have signed up for training this fall, for a total of about a dozen receiving training. A bill pending in the Massachusetts Legislature would boost the funding for police training by attaching a surcharge to car insurance; its fate remains unclear.

No, Timothy McVeigh Was Not Autistic

From Forbes Magazine

By Emily Willingham
May 21, 2014

According to mental health professionals who personally diagnosed serial killer Jeffrey Dahmer, he had a personality disorder. That didn’t stop the authors of a recent paper attempting to link autism and mass murderers, serial killers, and other homicidal maniacs from listing Dahmer as “highly suspected” of having an autism spectrum disorder, along with another 61 other people who were never diagnosed with one, including Timothy McVeigh, Terry Nichols, and Dylan Klebold.

I’ve seen some recklessness in my wanderings through the world of autism science, but these authors reach depths I cannot fathom. If you doubt that, let me just point out that they use the Daily Mail as one of their citations to demonstrate that a killer not diagnosed with autism might have it, and cite an author who very much wants to make up a diagnostic category called “Criminal Autistic Psychopathy” as a subset of Asperger’s. Which no longer exists.


In their paper, which is making a splash, of course, Clare Allely and co-authors claim that 67 of the 239 “eligible killers” they evaluated in their review had “definite, highly probable, or possible” autism spectrum disorder. But a closer look at their numbers shows that of these, only six were in the “definite” category [ETA: details on those six summarized here]. That’s 2.5% of the total of 239 they examined. It’s a percentage that happens to be just slightly less than the 2.6% identified in the most thorough study of autism prevalence in the general population to date, in South Korea.

The evaluations of the South Korean population were thorough, but perhaps no other population receives more expert attention and evaluation than killers like these who survive their crimes, as Dahmer, McVeigh, and Ramirez did, and killers who do not but whose writings and other leavings undergo deep scrutiny from experts involved in their cases.


Their evaluations are not a mystery. Psychologists had access to Dahmer and evaluated him. Psychologists had access to Richard Ramirez (the Nightstalker) and evaluated him. Ditto McVeigh. These are professionals who personally evaluated these killers, and “autism” was not on their list of labels.

It is inappropriate for anyone–much less these authors, giving the imprimatur of science and peer review–to diagnose from a distance someone they have never even met and with whose case they are not deeply familiar.


Add to that their conflation of mass murderers and serial killers, whose psychic motivations can be very different, and this entire paper is one big, hot, irresponsible mess.

One that, I’ll add, is quite opaque on the criteria they used to diagnose these killers as “highly probable” or “possible” for having an autism spectrum disorder and at one point elides it completely by referencing “evidence of ASD traits.” Everyone shares autism traits–autistic people aren’t Martians with an entirely separate set of nonhuman behaviors.

That doesn’t make everyone autistic, including people who might have overlapping traits and commit terrible acts. And autistic people who do commit terrible acts are no more representative of autism than are the men who commit such acts representative of men in general.

Evidence-based studies examining established commonalities among people who commit crimes like this can be enlightening, but wild speculation and retrospective diagnosing do nothing useful and can cause considerable harm to law-abiding people who carry any of these labels, whether autism, schizophrenia, bipolar disorder, or others that have been suggested.

Autistic people are people, and like other people, some tiny percentage of them can engage in violent behaviors, although overall, they “almost never” target anyone outside their families, plan the violence, or use weapons.

There is no single or even group of diagnoses that explains or predicts the horrific behavior of mass murderers. And some unsupported assumptions about autism – such as the continued canard that autistic people lack empathy (they do not) – help no one, and certainly don’t guide us to way to prevent such tragedies.

I’ve written about this issue before because of the link between Adam Lanza and autism, and the unifying feature of people who commit crimes like this isn’t a failure of eye contact in childhood or being quirky or weird or distanced–none of which is remotely pathognomonic for autism. The vast majority who commit these crimes are men. Some, including Timothy McVeigh, have or had conditions common to many many of us, including depression, obsessive-compulsive disorder, and panic attacks, all of which the psychiatrist who evaluated McVeigh identified.


That doesn’t mean that we need to starting eyeing depressed men askance or spend time searching around the archives of serial killer and mass murder cases for “evidence of depressive traits” so that we can retrospectively diagnose them with depression.

Serial killers aren’t like mass murderers. They are compulsive sadists–not a feature of autism–who do tend to lack empathy. Some are angry. Mass murderers like McVeigh might share that lack of empathy, but they have something else that drives them, too. Another feature of McVeigh’s psyche, according to that diagnostician, was anger. Rage. Hatred.

The authors of this egregious paper helpfully provide some silly Venn diagrams that allegedly show the overlap of autism, brain injury, and emotional distress. But as I’ve written before, the real unifying feature of most mass murderers isn’t any of these. It’s the anger and the rage, often blasted outward at innocent targets by way of easily accessible firearms. No autism required … or, in the vast majority of cases even identified in this paper … diagnosed.

Monday, May 26, 2014

The Narcissistic Parent of the Special Needs Child

From ClaireLaZebnick.com

By Claire LaZenick
May 24, 2014

So in her new autobiography (no link–please don’t buy it), Toni Braxton apparently spends some time speculating that her child’s autism may have been God’s punishment for an abortion she’d had. I’ll leave others to argue the theology here. I’ll even let others discuss the inarguably revolting, small-minded, bigoted and hurtful assumption that autism is a punishment. I’m just going to focus in on the mind-boggling narcissism of that statement.

So this is all about you, is it, Toni? Your previous behaviors in some way influenced the child who was born to you? Does that mean children are meted out according to how we’ve conducted ourselves in the past? “You once swore at your mother and shoplifted–you get a kid with a learning difficulty”; “You, over there, nice work on your college thesis! You’re going to get a smart and adorable little girl, just like you always wanted!”

Oh, for fuck’s sake . . . (Excuse the language, but some things are so ridiculous they deserve a hearty “for fuck’s sake,” don’t you agree?)

As my smart friend Angie pointed out, this is really just the flip side of the people who say that special needs kids are “bestowed” on those parents who are so patient, kind, and strong that they can deal with it. If you’re a mom struggling with a tough situation, feel free to think that–I’m of the “whatever gets you through the night” school of parenting. But here, on my page, can we all agree that our children aren’t a referendum on us and our behavior, but people in their own right? That no one is handing out children based on our past activities or some secret personality test?

Here’s the deal: when you decide to have a child (or, you know . . . just have sex without using birth control), you’re signing an invisible contract, one with a lot of small print on it. And that small print says that there are no guarantees about the kid you’re going to have. If you want baby perfection, get a doll. Real kids come with real problems and real surprises. From the moment the sperm hits the egg, you’ve given up control (actually, if you were doing it right, there was a fun loss of control right before the sperm hit the egg, but that’s not really the point here).

That baby is going to come out of you with his own agenda, needs, and brain. (Any parent who’s tried to get a newborn to sleep at night should have learned this lesson already.) He is not a reflection of you. She’s not a reward for your great patience or punishment for your evil deeds. He’s not here to fulfill your unfulfilled dreams. She’s not here to reflect glory on you all the days of your life.

Here’s what the real deal is: by getting pregnant, you agreed to love and look after this child for as long as you both are alive. And your job is to see your child for who she really is–imperfections and all–and to make her the absolute best, most realized, most comfortable version of herself she can be. For some kids, that may require multiple trips to the hospital; for others, it may include a lot of speech and behavioral therapy; for others, it may be more of a “sit back and let him rip” kind of situation.

You give your child what your child needs, and you give it with love and acceptance. This is your child. He’s not a good conduct medal and he’s not a punishment and he’s not a way to prove you’re a better mother than your sister. Look at your child. Know your child. Love your child. Teach your child. Be there for your child. And maybe hold off on buying any more Toni Braxton songs on iTunes.


About Claire LaZebnick

Claire Scovell LaZebnick grew up in Newton, Massachusetts, went to Harvard and moved to LA. She has written five novels for adults, Same as It Never Was, Knitting under the Influence, The Smart One and the Pretty One, If You Lived Here, You’d Be Home Now, and Families and Other Nonreturnable Gifts. I’ve also published two YA novels with Harper Collins: Epic Fail and The Trouble with Flirting.


She contributed to an anthology play called Motherhood Out Loud, and have been published in The New York Times, Self, Vogue and other magazines.

LaZebnick has a son with autism.

Distinct Differences Mark Male, Female Autism Brains

From SFARI.org
The Simons Foundation Autism Research Initiative

By Jessica Wright, Ph.D.
May 22, 2014

Male and female preschoolers with autism have distinct sets of brain regions that distinguish them from typically developing controls, according to unpublished research presented Saturday at the 2014 International Meeting for Autism Research in Atlanta.

The findings suggest that differences in brain structure may underlie autism’s gender bias. The disorder is four times more common in males than it is in females. Girls with autism tend to have more autism-linked mutations than do boys with the disorder. This has led some researchers to suggest that girls are somehow protected from autism, and need a heavier mutational burden than boys do to develop the disorder.



Brain protection: Some brain regions that distinguish girls with
autism may be linked to their ability to compensate for their problems.

The data presented Saturday suggest that part of this protection may originate from differences in brain structure. Some of the brain regions that differ between girls with autism and female controls also generally distinguish typical girls from typical boys. These changes to ‘female’ brain regions also seem to track with the ability to adapt in girls with autism.

“These regions may not be associated with autism severity, but rather with some compensatory or adaptive function,” saysChristine Nordahl, assistant professor of psychiatry at the University of California, Davis MIND Institute, who presented the results.

Nordahl and her colleagues scanned the brains of 22 girls with autism and 27 age-matched female controls, as well as 134 boys with autism and 54 male controls. The researchers scanned the children while they slept to assess their brain structures. The children were all about 3 years of age and have similar intelligence quotients and autism severity.

The researchers divided the cortex — the outer layer of the brain, responsible for most higher-order functions — into 68 regions. They looked for differences in the size of these regions between the groups.

The boys and girls with autism each have brains that differ from those of their respective control groups, with changes in regions relevant to autism. Surprisingly, however, the changes in boys with autism are completely different from the changes in the girls with autism.

In girls, changes to the volume of the left superior temporal gyrus — a region critical for language processing — are associated with greater autism severity. In boys, this is true for the left anterior cingulate, which has been linked to empathy and emotion.

Although the results are preliminary, the researchers hypothesize that the brains of girls with autism show evidence of compensatory mechanisms. Nordahl says she aims to recruit at least 90 more girls to balance the number of males and females in the study.

Sunday, May 25, 2014

Parent’s Line of Work May (Indicate) Increase(d) Autism Risk

From DisabilityScoop

By Michelle Diament
May 20, 2014

What type of job a parent holds may influence their child’s odds of having autism, new research suggests.

In particular, fathers who work in fields deemed technical — or those requiring less social interaction — appear to be more likely to have children with autism, researchers say.

The findings were presented at the International Meeting for Autism Research in Atlanta last week.

For the study, researchers looked at parents of 273 children with autism ages 7 to 18. They used the federal government’s Standard Occupational Classification system to divide parents into two groups — those with technical jobs requiring little social interaction versus those with non-technical jobs that are more people-oriented.

Dads working in engineering are twice as likely to have a child with the developmental disorder while those in finance are four times more likely, the study found. Meanwhile, fathers working in the health care field have six times higher odds of their child being on the spectrum.

What’s more, while there was no direct association related specifically to a mother’s line of work, children with both parents working in technical fields were found to be at higher risk of having a more severe form of autism, researchers said.

“Parental occupation could be indicative of autistic-like behaviors and preferences and serve as another factor in a clinician’s diagnosis of a child with suspected autism,” said Aisha Dickerson of The University of Texas Health Science Center at Houston who led the study.

The Overmedication of Our Kids is Worse than We Thought

From Esquire Magazine

By Ben Collins
May 22, 2014

10,000 American toddlers are now taking ADHD medications like Adderall before they even have a meaningful interaction with another person.

At least 10,000 American toddlers, either two or three years old, are being given medications like Adderall for ADHD. They are being diagnosed with a behavioral disorder sometimes before preschool, and before they ever meaningfully interact with another person.

The New York Times talked to a behavioral pediatrician about it, Dr. Doris Greenberg. She doesn’t believe it's possible that the number of toddlers with ADHD can be as high as 10,000.

“Some of these kids are having really legitimate problems,” Dr. Greenberg said. “But you also have overwhelmed parents who can’t cope and the doctor prescribes as a knee-jerk reaction. You have children with depression or anxiety who can present the same way, and these medications can just make those problems worse.”



Oftentimes, kids are just kids. Rambunctiousness in children, the desire to move around while learning, or a temporary frustration with the brand new world around them—these are not treatable diseases. Those things are, in fact, the fundament of childhood.

As Esquire reported last month, 11 percent of American schoolchildren in 2013 had been diagnosed with ADHD, including 15.1 percent of boys. That’s 6.4 million kids.

The growth of ADHD diagnoses, too, run in a direct parallel to the marketing of and sales of ADHD medications. Sales of ADHD drugs in the last four years have grown 89 percent, and a lot of it comes from the nonstop parental desire for their kids to simply catch up.

Younger students in class are 30 percent more likely to be diagnosed with ADHD than their older classmates—and the number balloons to 41 percent when you only include boys.

Now, in an effort to “catch our kids up,” we might be eliminating any chance at giving them normal life. Forty-eight percent of those who have taken ADHD medications, according to one study, suffered side effects like mood disturbances or sleep problems.

We are prescribing 10,000 two and three-year-olds these same stimulants, and we don’t yet know if the process is safe for anyone—especially toddlers. Only one drug, the amphetamine Adderall, is approved for use in children under six, and its approval came after only one study in 2006. Eleven percent of the 303 preschool participants in the study had to drop out due to intolerable side effects. Ten percent had to drop out due to severe weight loss.

Worse, critics have since questioned the methodology of researchers and have noted theirties to the pharmaceutical industry. Still, this study—one that never contained a single two-year-old—is used to prescribe a new kind of drug to a toddler at any age.

ADHD is not a fictitious disease. Some children need medication like Adderall in order to thrive in school. Their quality of life and learning depends upon it.

Ten thousand toddlers do not. Toddlers are toddlers. Boys are boys. They are not tools for the future of the Earth that need to medicated into place. They are our sons and daughters, and they will be their very own people, if we ever allow them to grow into that.

Saturday, May 24, 2014

From EXPLORE

May 23, 2014

To give you pause: If we treated physical illness like we do mental illness.

Complement with a fascinating read on mood science and the evolutionary origins of depression, and artist Bobby Baker’s courageous visual diary of mental illness.


John Elder Robison at IMFAR: On Autism Rights, Ethics and Priorities

From The Thinking Person's Guide to Autism

By Shannon Des Roches Rosa
May 23, 2014

John Elder Robison was a discussant for the Autism Social, Legal, and Ethical Research Special Interest Group at the 2014 International Meeting for Autism Research (IMFAR). He ended up taking the group to task, stating that the autism science community is headed for disaster if it does not change course on several factors – and noting for context the larger size of the US autistic community in proportion to other minority groups such as Jewish or Native American communities.

Mr. Robison asserted that autistic people need to be the ones providing oversight and governance for autism research. He condemned the use of words like “cure.” He pointed out that researchers’ explicit or implicit efforts to eradicate autistic people is a formula for disaster and needs to stop. And he affirmed that memoirs and narratives written by autistic people are more trustworthy than writing about autism by nonautistics.

Many thanks to IMFAR participant and community member Todd Melnick for transcribing this talk.


...................................................................................

Good morning,

I am the autistic person who was given the task of offering commentary on this 2014 IMFAR ethics panel discussion. One of the first things mentioned -- by Bryna Siegel -- were some of the questions the public asks those who work in the field. There was some talk of how scientists and clinicians might respond when queried. As examples, she offered, “There’s an epidemic of autism, what do you think?” “There’s more autism lately, what do you think?”

One question she didn't mention -- and I think it’s important to begin with this -- is What’s the meaning of “1 in 68” [the current CDC estimate for autism prevalence]?

I’ve served on the CDC and NIH committees to discuss the formulation of the research leading to such numbers, and how we derive them. I serve on the Interagency Autism Coordinating Committee (IACC) where we create the government’s strategic plan for autism. From the perspective of someone who saw how we got there, 1 in 68 tells me autistic people have always been a part of society, and are always going to be here. We are recognizing that the autistic population is bigger than anyone ever imagined.

Let me put in perspective what “1 in 68” means. 1 in 68 and rising means that there are more autistic people than there are Jewish people in the United States. There are more than twice as many autistic people as there are Native American.

Now let us consider autistic people as a group compared to Jewish people or Native Americans as a group. Who would you imagine would advocate for one of those groups? It would be a Native American or a Jewish person. Of course it would. We wouldn’t expect anything else. And yet we are still having a discussion about who should advocate for autistic people. What’s wrong with that picture?

It’s something that really needs to change. The continuing use of words like “cure” in a discussion of autism is a slap in the face to everyone who celebrates the gifts autism has brought us. It’s more that just disability. Then there’s the continuing reality that lay people in the community believe that scientists want to do genetic research to eradicate autistic people. That may be the farthest thing from a researcher’s mind but the fact that the public believes it is a disaster for researchers. And the only way we’re going to avoid more such disasters is to bring autistic oversight and governance into research. That, to me, is a really important matter.



John Elder Robison
We had a couple of questions raised in the [ethics] discussion. We asked who should make ethical decisions with respect to autistic people. And who should we trust for narratives about life with autism? We have narratives that are written by autistic people, and we have narratives written by observers of autistic people. But think about Jewish or Native American narratives. Who do you trust? Narratives written by outsiders? Or stories of Jewish life in a Jewish person’s own words? It should go without saying. 

And I heard someone stand up here and say, “the problem with narratives from autistic people is that those narratives are written by ‘high-functioning’ people.” And we can say something like that about every other group. There are rich Jewish people and poor Jewish people, there are rich Native Americans and poor Native Americans, there are smart ones and foolish ones. You can pick any trait that you wanted to talk about and you can say that the other is the one writing about it. That does not invalidate the narrative.

When it comes to written narratives, from any group, we can always say this: they will be written by the more articulate members of that group. That does not detract one bit from their validity either. We see a range of narratives emerge over time; they will ultimately describe a broad swath of experience within our community. The fact that our community is recently recognized means we don’t have as many narratives as, say, Jewish people, but they are coming and they deserve to be respected.

I believe that ultimately it’s our group, it’s our place to tell our stories, and it’s our right to determine our fate. And I think that applies in the legal arena, it applies in the medical arena, it applies in school; it applies everywhere.

Anyone who questions that needs to really step back and think about that 1 in 68 number, because the 1 in 68 number says we’re not dealing with a small population that is ‘diseased,’ we’re dealing with a significant subgroup of humanity. And that subgroup isn’t going to be gotten rid of.


If we were to suggest we should do medical research aimed at eliminating any other population subgroup, can you imagine the opprobrium that would follow? You would be run out of the room! And yet people still say that about autism.

And I know it is easy to look at somebody like me and say, “well he’s a ‘high-functioning’ guy, and he doesn’t know what it’s like to be around people who can’t talk and can’t take care of themselves. How do you know I don’t know? I have cousins who can’t talk. I have cousins who can’t read and do things. And I’m well aware of what life is like for people like that.

I’m also well aware of how autistic people transform as we get older. You look at me and you think that I’m articulate now. But in school people called me a “retard,” and they called me a “mental,” they called me all kinds of other things. Presumably I didn’t look as smart and articulate as I do now, if I was called those names, because it happened.

And while I will not claim to have the experience of living the life of someone who can’t speak, neither can any of you who are parents of someone who can’t speak. I don't know that you are tremendously closer to it than I or anyone else. And by making that statement I’m not telling you that I’m better qualified, or know your son better. I guess neither of us knows what it is to be inside someone else’s head.

I’m saying if we have to cast a vote, we have a duty as a society ... I think the overarching ethical duty is that the affected group is the one who has the absolute right to make the decision about itself. And then, the next group in line, would be the closest affected unit, which would be the parents. But the parents are not number one, the parents are number two. And we’ve lost sight of that in the autism community because autism was perceived to be a children’s problem and the advocacy movement was started by parents, and it represented the interests of parents. Now, we recognize that autism is a lifelong developmental difference. And its study should be guided by autistic adults.

I didn’t actually come in here expecting to express such a strong point of view to you folks, but having heard these ethical questions, and having learned that one of the ethicists in today’s discussion was a grad student of my father’s, and having grown up with a dad who taught ethics and led the UMass Philosophy Department for 30+ years; and my father and me coming from a line of preachers and ethicists and lawyers, I thought, well, I should just come up here and say these things.

I think many valid points have been raised here. All too often we autistic people have no part in planning our lives. And I think that we have a real problem when we look at people with major autistic challenges, and people with those challenges who have a difficult time speaking -- but I don’t believe the question is “who’s going to speak for them.” I believe the question is, “when are we going to develop science to let them speak themselves?”

And to say one final thing about this “cure” business: everyone who lives with autism experiences suffering. You look at me and I look articulate, but I suffer, in some way, every single day. You know, you look at somebody like me and you think, he looks, you know, so successful and so functional … but those of you who were in some of the adult outcome presentations here at IMFAR saw that anxiety affects forty per cent of us, depression affects forty per cent of us, several per cent of us kill ourselves. Those are absolutely very real risks every single day for me.

So I, too, live with those things. And you know, if I knew a way to remediate that I would seize it in a second. And I think that the duty of scientists is to develop tools in this context to relieve and remediate discomfort and suffering. It is NOT to develop something that is called “a cure,” which has the ring of getting rid of us. And it’s really really important that scientists understand the use of that word, and the language. Because to so many people in the autistic community, “cure” equates to elimination.

And I know that many of you scientists don’t mean that at all, I know many of you parents don’t mean that, I know when parents say “I want to cure my son’s autism,” what they’re really saying is: “I want to relieve what I see as my son’s suffering.” I believe that so I don’t feel anger at those parents. But there’s a lot of people who see this issue really, really differently than me. And they see it as a really black and white thing, and I think you’re venturing into a minefield when you continue to carry on the conversation like that.

If we can focus on relieving suffering and maximizing capability, and when we open up a dialogue and recognize that autistic people stand with other significant recognized minorities in America, then we can begin to talk about changing society.

And about changing society -- this goes back to my father the philosopher and his ancestors -- My father and I [are descended] from another philosopher and minister who founded the Anglican church in Bruton Parish, Virginia in 1678. One reason I’m at The College of William and Mary today is that his son was one of William and Mary’s first faculty, in 1699. And I believe those ancestors, of mine, were autistic. I look back at history (William and Mary is kind of the seat of the study of colonial history in America), and I see that autistic people at most levels were not disabled in colonial America.

It’s easy to see how somebody like me, who grows up to be able to talk and work, would not be considered disabled by many today. But it’s also interesting to see that there are many narratives that describe other people today as intellectually disabled, and non-verbal autistic, or ‘severely’ autistic. We have all of these modern, technical words for those people. But in colonial America, they called those same people sheepherders, and they called them blacksmith’s assistants, they called them a lot of things, and all those names related to their jobs.

Most of those people weren’t disabled in the context of their time. They are disabled today not entirely because of autism, they are disabled because they are different from the rest of the population, and society has changed in ways that exclude us. And that to me is a real tragedy.

Today we have a neurodiversity initiative at William and Mary, which I’m proud to be part of. Back at my home in Massachusetts we have a school that I co-founded that teaches automotive trades to high school students on the spectrum. A really interesting thing came to me in working with the W&M students and operating our high school. It’s regarding what we teach and how some jobs are supposedly “better” than others because of the intellectual power needed to do them. I’ve come to see the societal wrongness of that notion, how it’s exclusionary, and yet it’s everywhere today.

In contrast, in our TCS Auto Program, we teach the auto trade in the midst of a working automobile dealership complex. So our high school students are surrounded by a hundred guys doing everything they do at a dealership to fix and clean and deliver cars to their owners. When we get a student in there with an IQ of 60, and we get another with an IQ of 130, they are both equal. Because in a car dealership, the guy with the IQ of 60 might be a successful and popular detailer, and polish and wax the finest Rolls Royces. And he takes real pride in that, and every Rolls Royce owner comes in and gives him a tip because he made the car look so beautiful.

The kid with the IQ of 130, he does diagnostics under the dash and none of the customers even knows who he is, they just expect him to fix their cars. He doesn’t get recognized, but he’s important too because he solves tough problems. And the kids that are in the middle, they sit down and take apart transmissions and do other repairs. They are the heart of every dealership. The beauty of that is because they are part of a community -- not a school, where they’re segregated -- everyone has a place that’s equal. The guy who cleans cars is the guy who cleans cars. He’s not in the slow class, he’s not called stupid; he’s just the guy who details cars.

And we’ve lost sight of that in our schools. So these changes might start with schools recognizing that classes aren’t for people who are “less” or “more,” they’re just for people. And if we structure classes like we structure work, we don’t put the people with one IQ in one class and in another, we put everyone together and let them be together, doing different jobs. That’s what happened in colonial America, that’s what can happen in some businesses in America today, and that’s really the key to bringing autistic people into society, bring society back to the model that accommodated us for thousands and thousands of years because the 1 in 68 today was 1 in 68 in 1900, and 1800, and 1700, and every century before that.

So I’m out of time… probably not what you expected to hear, but those are my reactions to what I have heard. Thank you.