By Debra Viadero
New York
A forthcoming research review offers some counterintuitive advice for educators: Take time out of the curriculum to teach students to manage their emotions and to practice empathy, caring, and cooperation—and their academic achievement could improve in the bargain.
The new findings, discussed last week at a national forum here on social and emotional learning, are based on a not-yet-published analysis of 207 studies of school-based programs designed to foster children’s social and emotional skills.
“In the past, when people would say, ‘You’re taking away from academic time for these programs,’ we would say, ‘Well, it’s not going to hurt learning,’ ” said Roger P. Weissberg, the president of the Collaborative for Academic, Social, and Emotional Learning, or CASEL, the Chicago-based group that sponsored the four-year study. “What we find now is that when you have these programs, academics improve.”
The results come at what some see as a critical juncture in the movement to promote social and emotional learning. Research findings in education and other fields, such as brain science, seem to be converging on the benefits of such instruction, and programs based on the concept have a small but growing presence in schools.
One state, Illinois, has set down standards for teaching the subject. Another, New York, is developing voluntary guidelines for teaching students social and emotional skills. Lessons in social and emotional learning are also taught in some districts, from New Haven, Conn., to Anchorage, Alaska.
Some advocates of social and emotional learning contend that one roadblock to more widespread implementation of their programs is the federal No Child Left Behind Act, which has put new pressure on schools to raise test scores in core subjects and narrowed the curricular focus in some schools.
But the nearly 6-year-old law also calls on educators to employ “scientifically based” educational practices, and leaders of the movement for social and emotional learning hope the new findings will give their programs a more solid footing in schools nationwide.
“This research confirms what a lot of us have been saying for years,” said Dr. James P. Comer, the Yale University psychologist best known for developing the Comer School Development Project, a model for improving the social, emotional, and academic outcomes of urban schoolchildren. “It’s almost counterintuitive for some people to believe that it’s about how you treat kids.”
207 Studies Analyzed
For their analysis, the CASEL researchers sifted through 700 studies on a broad range of school-based programs aimed at honing students’ social and emotional skills. Such programs might include, for instance, character education lessons, anti-bullying efforts, drug-abuse-prevention programs, or conflict-resolution training.
Out of that hodgepodge, the researchers culled 207 studies that met their criteria for inclusion in the analysis. The studies had to involve typical students ages 5 to 18, and use a control group of students, so that any gains could be compared against those that students might be expected to make under normal circumstances.
Just under half the studies also went a step further and randomly assigned students to either the experimental or the comparison group.
Strong Effects Found
Illinois Social and Emotional Learning Standards
The state has adopted standards for the social and emotional skills that K-12 students should be taught.
GOAL 1: Develop selfawareness and self-management skills to achieve school and life success.
(A) Identify and manage one’s emotions and behavior(B) Recognize personal qualities and external supports(C) Demonstrate skills related to achieving personal and academic goals
GOAL 2: Use social-awareness and interpersonal skills to establish and maintain positive relationships.
(A) Recognize the feelings and perspectives of others(B) Recognize individual and group similarities and differences(C) Use communication and social skills to interact effectively with others(D) Demonstrate an ability to prevent, manage, and resolve interpersonal conflicts in constructive ways
GOAL 3: Demonstrate decisionmaking skills and responsible behaviors in personal, school, and community contexts.
(A) Consider ethical, safety, and societal factors in making decisions(B) Apply decisionmaking skills to deal with academic and social situations(C) Contribute to the well-being of one’s school and community
SOURCE: Collaborative for Academic, Social, and Emotional Learning
Across the board, the researchers found, the programs did what they were supposed to do: After the lessons, the students in the experimental groups were better behaved, more positive, and less anxious than their control-group peers. The program students had also, apparently, gotten smarter, as measured by their grades and test scores.
As a group, those students scored 11 percentile points higher than the comparison-group students on a measure known as an “improvement index.” The term, borrowed from federal education researchers, refers to the difference between the mean percentile rank for the intervention group and that of the control group.
“The impact here is almost twice that of studies on class-size improvements,” said Mr. Weissberg, who is also a professor of psychology and education at the University of Illinois at Chicago. He was a co-author of the report with Joseph A. Durlak, a Loyola University of Chicago psychologist, and other researchers.
CASEL is scheduled to publish the report in early 2008. Mr. Weissberg shared the findings at the Dec. 10 meeting in New York, which was aimed at charting a future course for the 13-year-old organization and the movement it helps promote.
“When kids are disaffected or they’re not motivated and engaged, improving academic test scores is a real challenge,” Mr. Weissberg added, “and that can’t be done unless you address students’ social, emotional, and cognitive needs.”
Some Skeptical
The analysis also showed that the good effects persisted six months or more after students took part in the programs, although to a lesser degree. And the lessons were even more effective when they were provided by teachers, rather the program developers or researchers, Mr. Weissberg said.
Some experts, however, continue to caution that such findings should be viewed with a dose of skepticism because since they have yet to be published in a peer-reviewed academic journal.
“I have always been a bit skeptical of in-house studies, because it’s often the case that the people who do the evaluations have a stake in the outcome turning out a certain way,” said Kevin R. Murphy, a professor of psychology, information sciences, and technology at Pennsylvania State University in University Park, Pa.
A critic of the theory of “emotional intelligence,” Mr. Murphy was not part of the CASEL meeting. “That’s not to say these programs can’t work,” he added. “But this is an area where the claims often run ahead of the evidence.”
But Richard J. Davidson, a professor of psychology and psychiatry at the University of Wisconsin-Madison, noted that the findings dovetail with his own work on emotion and the brain’s structure and function. While studies have long shown that negative emotions, such as anxiety and fear, can interfere with learning, Mr. Davidson, who was named one of the world’s most influential people by Time magazine in 2006, has documented that in people who undergo regular training in meditation or other practices akin to social and emotional learning, the brain circuitry actually changes.
“Social and emotional learning likely produces beneficial changes in the brain,” Mr. Davidson told conference-goers here.
Though research is needed to better document the mechanics of such transformations, he said, “qualities such as patience, calmness, cooperation, and kindness should really now best be regarded as skills that can be trained.”
‘Not an Easy Sell’
Policymakers and educators at the K-12 level, though, can be reluctant to incorporate such teachings into the curriculum, said Carol S. Comeau, the superintendent of schools in Anchorage. Lessons in social and emotional learning have been part of the regular instructional program across that 48,500-student district since 2004.
“It was not an easy sell,” Ms. Comeau said. “Some members of our school board thought it was really about self-esteem and helping kids feel good about themselves.”
Test scores have risen districtwide since the changes have been incorporated. And now an ongoing study by the Washington-based American Institutes for Research suggests that some of that improvement could be due to the lessons.
Since 2005, David Osher, the lead researcher on the AIR study, has surveyed staff members and students across the district in grades 5-12 on measures of school climate—factors, in other words, such as the extent to which students feel safe and cared for in schools, whether parents are involved in schools, and the pervasiveness of student drug and alcohol use.
“When the school climate and school connections measures go up,” Mr. Osher said, he has found that “students’ performance on statewide tests in reading, mathematics, and writing also goes up.”
Coverage of education research is supported in part by a grant from the Spencer Foundation.
Vol. 27, Issue 16, Pages 1,15
Wednesday, December 26, 2007
Monday, December 24, 2007
"Today's Man" to air on 13/WNET January 11, 2008
Today’s Man
Nicky Gottlieb was a child of extraordinary talents and odd behavior. At age 21, he was diagnosed with Asperger Syndrome, a high functioning form of autism.TODAY'S MAN follows Nicky over the course of six years as he struggles to leave the safety of his family's home and find his own place in the world.
The Filmmakers
From filmmaker LIzzie Gottlieb:
When you meet Nicky, you might find him offensive and rude, or charming and quirky, or brilliant and adorable, or aggressively intrusive. It is my hope that this film could explain Nicky and those like him to people who might otherwise write him off, take offence or become angered by him. I would like them instead to see his humor and charm and intelligence and warmth and enthusiasm and enormous potential.
One in 160 children born today are on the autistic spectrum. That is a staggering number. There are more and more resources for children with autistic spectrum disorders, which is wonderful. But I have found that there is so little for adults. No one seems to be asking what happens to these children when they grow up. Most of the adults I know with Asperger Syndrome are living with their aging parents. Some have successful jobs, others less so. These people have such a tremendous amount to offer society. We need to create ways for their energy and intelligence to be used productively. We need to figure out living situations that work for them. I hope that my brother and this film will encourage people to find these solutions.
Nicky Gottlieb was a child of extraordinary talents and odd behavior. At age 21, he was diagnosed with Asperger Syndrome, a high functioning form of autism.TODAY'S MAN follows Nicky over the course of six years as he struggles to leave the safety of his family's home and find his own place in the world.
The Filmmakers
From filmmaker LIzzie Gottlieb:
When you meet Nicky, you might find him offensive and rude, or charming and quirky, or brilliant and adorable, or aggressively intrusive. It is my hope that this film could explain Nicky and those like him to people who might otherwise write him off, take offence or become angered by him. I would like them instead to see his humor and charm and intelligence and warmth and enthusiasm and enormous potential.
One in 160 children born today are on the autistic spectrum. That is a staggering number. There are more and more resources for children with autistic spectrum disorders, which is wonderful. But I have found that there is so little for adults. No one seems to be asking what happens to these children when they grow up. Most of the adults I know with Asperger Syndrome are living with their aging parents. Some have successful jobs, others less so. These people have such a tremendous amount to offer society. We need to create ways for their energy and intelligence to be used productively. We need to figure out living situations that work for them. I hope that my brother and this film will encourage people to find these solutions.
Helping Police Officers Understand the Autistic
By TINA KELLEY
Published: December 21, 2007
BRICK TOWNSHIP, N.J. — An autistic boy is discovered standing in the middle of a busy road, on his way to the beach. A young girl with autism outsmarts a number of locks, leaves the house before her mother wakes up and is found, naked but alive, in a neighbor’s pool.
At a recent training for police officers here, both cases illustrated the often delicate task of dealing with people who suffer from autism, a devastating neurological disorder that often strikes in childhood and that impairs one’s ability to communicate and to relate to others.
In the training, the officers were taught that turning off flashing lights and sirens on a police car could make the difference between a peaceful or chaotic encounter, and that if they asked someone with autism if they wanted to waive their rights, they might find that the person waved back at them.
People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001.
A co-author of the article, Dennis Debbaudt, who is also the author of “Autism, Advocates and Law Enforcement Professionals,” led the training. He noted that a 2007 study by the federal Centers for Disease Control and Prevention showed that 1 in 150 children in New Jersey have received a diagnosis of autism, a rate 15 times higher than previous estimates and among the highest in the country.
But when Mr. Debbaudt asked whether any of the police officers, from departments throughout New Jersey, had received training on autism, either at police academies or on the job, only a few raised their hands.
The training, sponsored by Parents of Autistic Children, a nonprofit service group based in Hazlet, featured videos, lectures and the personal accounts of parents whose children have a form of autism. Among them were Mr. Debbaudt and Gary Weitzen, director of the parents’ group, whose son was the one found in the middle of the road, headed for the beach.
Mr. Debbaudt told the officers that they should understand autism “for the safety of others, and so you can go home safe to your families, so you can make the best use of your time and resources, enhance your communication skills and avoid litigation.”
He cited the case of Calvin Champion Jr., a 32-year-old man with autism who died in 2000 after Nashville police officers used pepper spray on him and subdued him. His family filed a federal lawsuit against the police and the social service agency caring for him, and was awarded $4.4 million.
Mr. Debbaudt said he had heard of 6 to 12 cases each year in which people with autism are harmed, hit with a stun gun or killed by law enforcement officials.
The officers were told to take plenty of time and be calm when interviewing autistic people. Some are crime victims, some are suspects, but the majority who come to the attention of the police have wandered away from their caregivers, often without an understanding of the dangers of traffic or open water, which often attracts them. In fact, drowning is a leading cause of death for people with autism, Mr. Debbaudt said.
People with autism may be very afraid of or very drawn to police dogs, Mr. Debbaudt said. They may be attracted to an officer’s badge and try to grab it, and they may panic if their routines are broken, if their favorite objects are taken from them, or if surrounding sights, sounds and smells overwhelm them.
Similar training sessions have been offered around the country. Autism Speaks, a nonprofit advocacy and fund-raising group, worked with the Chicago Police Department last spring, and it is working on a safety tool kit for all first responders, said Lisa Goring, director of family services for the group.
“We’ve heard from families as well as from professionals that they just need more instruction, certainly in terms of first responders understanding that a person with autism may not respond appropriately or may not respond at all when given a command,” she said.
A bill cosponsored by State Senator Loretta Weinberg would require autism awareness programs statewide for emergency medical technicians, police officers and firefighters. The bill was passed by the Assembly in March, and awaits action in the State Senate.
Published: December 21, 2007
BRICK TOWNSHIP, N.J. — An autistic boy is discovered standing in the middle of a busy road, on his way to the beach. A young girl with autism outsmarts a number of locks, leaves the house before her mother wakes up and is found, naked but alive, in a neighbor’s pool.
At a recent training for police officers here, both cases illustrated the often delicate task of dealing with people who suffer from autism, a devastating neurological disorder that often strikes in childhood and that impairs one’s ability to communicate and to relate to others.
In the training, the officers were taught that turning off flashing lights and sirens on a police car could make the difference between a peaceful or chaotic encounter, and that if they asked someone with autism if they wanted to waive their rights, they might find that the person waved back at them.
People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001.
A co-author of the article, Dennis Debbaudt, who is also the author of “Autism, Advocates and Law Enforcement Professionals,” led the training. He noted that a 2007 study by the federal Centers for Disease Control and Prevention showed that 1 in 150 children in New Jersey have received a diagnosis of autism, a rate 15 times higher than previous estimates and among the highest in the country.
But when Mr. Debbaudt asked whether any of the police officers, from departments throughout New Jersey, had received training on autism, either at police academies or on the job, only a few raised their hands.
The training, sponsored by Parents of Autistic Children, a nonprofit service group based in Hazlet, featured videos, lectures and the personal accounts of parents whose children have a form of autism. Among them were Mr. Debbaudt and Gary Weitzen, director of the parents’ group, whose son was the one found in the middle of the road, headed for the beach.
Mr. Debbaudt told the officers that they should understand autism “for the safety of others, and so you can go home safe to your families, so you can make the best use of your time and resources, enhance your communication skills and avoid litigation.”
He cited the case of Calvin Champion Jr., a 32-year-old man with autism who died in 2000 after Nashville police officers used pepper spray on him and subdued him. His family filed a federal lawsuit against the police and the social service agency caring for him, and was awarded $4.4 million.
Mr. Debbaudt said he had heard of 6 to 12 cases each year in which people with autism are harmed, hit with a stun gun or killed by law enforcement officials.
The officers were told to take plenty of time and be calm when interviewing autistic people. Some are crime victims, some are suspects, but the majority who come to the attention of the police have wandered away from their caregivers, often without an understanding of the dangers of traffic or open water, which often attracts them. In fact, drowning is a leading cause of death for people with autism, Mr. Debbaudt said.
People with autism may be very afraid of or very drawn to police dogs, Mr. Debbaudt said. They may be attracted to an officer’s badge and try to grab it, and they may panic if their routines are broken, if their favorite objects are taken from them, or if surrounding sights, sounds and smells overwhelm them.
Similar training sessions have been offered around the country. Autism Speaks, a nonprofit advocacy and fund-raising group, worked with the Chicago Police Department last spring, and it is working on a safety tool kit for all first responders, said Lisa Goring, director of family services for the group.
“We’ve heard from families as well as from professionals that they just need more instruction, certainly in terms of first responders understanding that a person with autism may not respond appropriately or may not respond at all when given a command,” she said.
A bill cosponsored by State Senator Loretta Weinberg would require autism awareness programs statewide for emergency medical technicians, police officers and firefighters. The bill was passed by the Assembly in March, and awaits action in the State Senate.
Friday, December 21, 2007
Mark you calendars for the YAI/NIPD conference May 5-9 2008 in NYC
Featured topics include:
· Advocacy/Self-Determination
· Management/Supervisory
· Aging
· Media/Public Relations
· Autism Spectrum Disorders
· Profound ID/DD
· Clinical Issues & Practices
· Psychopharmacology
· Day Services
· Quality of Life
· Dual Diagnosis
· Residential Services
· Early Childhood
· Sexuality
· Early Intervention
· Special Education
· Employment Training
· Staff Training
· Family Supports
· Technology
· Health Care/Medical
· Transitions
· Inclusion
· Women's Issues
· Legal, Ethical & Policy Issues
· Workforce
Life Planning
· Advocacy/Self-Determination
· Management/Supervisory
· Aging
· Media/Public Relations
· Autism Spectrum Disorders
· Profound ID/DD
· Clinical Issues & Practices
· Psychopharmacology
· Day Services
· Quality of Life
· Dual Diagnosis
· Residential Services
· Early Childhood
· Sexuality
· Early Intervention
· Special Education
· Employment Training
· Staff Training
· Family Supports
· Technology
· Health Care/Medical
· Transitions
· Inclusion
· Women's Issues
· Legal, Ethical & Policy Issues
· Workforce
Life Planning
Thursday, December 20, 2007
Never Lose Your Children at the Mall Again!
The ionKids system allows you to monitor up to four tagged objects at once. When the individual leaves a user-defined range, an alarm sounds on the portable Base Unit carried by the parent. The Base Unit can be put into "Find Mode," used to assist in directing parents back to their children. Each Base Unit can monitor up to 4 tamper-proof Bracelets simultaneously, allowing up to 4 children to be monitored from a single Base Unit. Additional bracelets sold separately.
If the tamper-proof Bracelet is removed from the child's wrist, a tamper alarm sounds instantly at the Base Unit to alert parents. Because the ionKids Child Monitor & Locator signal is not transmitted via cell towers, there are no recurring monthly charges. For added peace-of-mind, this unit comes with a 1 Year Factory Warranty against product defects.
For more information visit the ionKids website http://www.ion-kids.com/index.html or their licensed distributor's website, BrickHouse Security http://www.brickhousesecurity.com/vbsik.html
If the tamper-proof Bracelet is removed from the child's wrist, a tamper alarm sounds instantly at the Base Unit to alert parents. Because the ionKids Child Monitor & Locator signal is not transmitted via cell towers, there are no recurring monthly charges. For added peace-of-mind, this unit comes with a 1 Year Factory Warranty against product defects.
For more information visit the ionKids website http://www.ion-kids.com/index.html or their licensed distributor's website, BrickHouse Security http://www.brickhousesecurity.com/vbsik.html
Gene Study Shows Promise for Autism
REUTERS NEWS SERVICE
December 20, 2007; Page D7 WASHINGTON --
Genetic engineering can correct the worst symptoms in mice of Fragile X syndrome, the most common inherited cause of mental retardation and autism, researchers reported.
They said it is possible a drug could do the same thing as their gene tinkering, perhaps providing a treatment for Fragile X syndrome and other causes of retardation and autism, too.
Fragile X syndrome affects 90,000 to 100,000 Americans. It is caused by a mutation in a gene on the X chromosome. There is no treatment.
Howard Hughes Medical Institute investigator Mark Bear at the Massachusetts Institute of Technology and colleagues created this mutation in mice and corrected their symptoms by adding a few more genetic tweaks. They said an experimental class of drugs could have the same effect.
December 20, 2007; Page D7 WASHINGTON --
Genetic engineering can correct the worst symptoms in mice of Fragile X syndrome, the most common inherited cause of mental retardation and autism, researchers reported.
They said it is possible a drug could do the same thing as their gene tinkering, perhaps providing a treatment for Fragile X syndrome and other causes of retardation and autism, too.
Fragile X syndrome affects 90,000 to 100,000 Americans. It is caused by a mutation in a gene on the X chromosome. There is no treatment.
Howard Hughes Medical Institute investigator Mark Bear at the Massachusetts Institute of Technology and colleagues created this mutation in mice and corrected their symptoms by adding a few more genetic tweaks. They said an experimental class of drugs could have the same effect.
Wednesday, December 19, 2007
Affordable shows and activities for teens during Sundays, evenings, and vacation time!
ABOUT HIGH 5
High 5 Tickets to the Arts is a non-profit organization dedicated to making the arts affordable for teens. Through High 5, teens ages 13 to 18 can buy $5 tickets to the best of New York City dance, music, theater and visual arts events all year round.
In order to purchase tickets, all you need is an interest in the arts, a school ID and $5. Each teen may buy one extra $5 ticket for an adult if you'd like to go with a parent, teacher or mentor. If you would like to go to an arts event as a group, use our Take 5 Program to buy 5 tickets at $5 each and get a sixth ticket free to use for a teen or adult.
If you are interested in the visual arts, tickets to museums are two for $5 every day. We also have theater, dance, symphonies, Hip-Hop, film and spoken work, so check out our Events & Shows page for the Events Calendar and Picks of the Week.
To purchase the tickets, you can do so online with a credit card or with cash at the High 5 office located at 1 East 53rd Street, 5th Floor (near the 5th & 53rd stop on the E or V lines). Or call us at 212-750-0555 and we can process your order over the phone during office hours.
All the arts, all the time, all for $5.
Get all this and more at the teen address for the arts: www.high5tix.org
High 5 Tickets to the Arts is a non-profit organization dedicated to making the arts affordable for teens. Through High 5, teens ages 13 to 18 can buy $5 tickets to the best of New York City dance, music, theater and visual arts events all year round.
In order to purchase tickets, all you need is an interest in the arts, a school ID and $5. Each teen may buy one extra $5 ticket for an adult if you'd like to go with a parent, teacher or mentor. If you would like to go to an arts event as a group, use our Take 5 Program to buy 5 tickets at $5 each and get a sixth ticket free to use for a teen or adult.
If you are interested in the visual arts, tickets to museums are two for $5 every day. We also have theater, dance, symphonies, Hip-Hop, film and spoken work, so check out our Events & Shows page for the Events Calendar and Picks of the Week.
To purchase the tickets, you can do so online with a credit card or with cash at the High 5 office located at 1 East 53rd Street, 5th Floor (near the 5th & 53rd stop on the E or V lines). Or call us at 212-750-0555 and we can process your order over the phone during office hours.
All the arts, all the time, all for $5.
Get all this and more at the teen address for the arts: www.high5tix.org
NEW THERAPY GROUP - youth ages 9-12 with high-functioning ASDs
The Fay J. Lindner Center for Autism and Developmental Disabilities is excited to announce a
NEW THERAPY GROUP!
Is your child anxious?
Do lots of things scare your child?
Does your child have worries?
Does homework make your child feel stressed and overwhelmed?
Are your child’s anxieties and fears preventing them from participating in activities?
Do changes make your child upset?
If any of those difficulties pertain to your child, then this may be the right group for them! This new group will combine visual and verbal techniques to teach coping skills and reduce anxiety over the course of 8 weeks. This group is suitable for:
youth ages 9-12 with high-functioning ASDs (average range verbal IQ) and some conversational skills
There will be some verbal demands in the group but the group will also utilize visual strengths.
The anxiety and coping skills group for children between ages 9-12 will be starting soon on Tuesdays from 5 to 6pm.
Please contact Samara-Pulver Tetenbaum at
(516) 802-8600 to sign up.
NEW THERAPY GROUP!
Is your child anxious?
Do lots of things scare your child?
Does your child have worries?
Does homework make your child feel stressed and overwhelmed?
Are your child’s anxieties and fears preventing them from participating in activities?
Do changes make your child upset?
If any of those difficulties pertain to your child, then this may be the right group for them! This new group will combine visual and verbal techniques to teach coping skills and reduce anxiety over the course of 8 weeks. This group is suitable for:
youth ages 9-12 with high-functioning ASDs (average range verbal IQ) and some conversational skills
There will be some verbal demands in the group but the group will also utilize visual strengths.
The anxiety and coping skills group for children between ages 9-12 will be starting soon on Tuesdays from 5 to 6pm.
Please contact Samara-Pulver Tetenbaum at
(516) 802-8600 to sign up.
Tuesday, December 18, 2007
Free Park Pass from the National Forestry and Wildlife Division
Park Pass
A great benefit from the National Forestry & Wildlife Division. You may or may not know about.
It is a free lifetime access pass for any person with a disability or forthe caregivers of a person with a disability. It allows access to ALL national parks for free.All that is required is a letter from the physician stating the disability and you take it to your local National Forestry & Wildlife Division to get the pass. Each pass will admit up to 4 adults and children under 16 are always free.
This link answers all the questions:http://store.usgs.gov/pass/access.html
A great benefit from the National Forestry & Wildlife Division. You may or may not know about.
It is a free lifetime access pass for any person with a disability or forthe caregivers of a person with a disability. It allows access to ALL national parks for free.All that is required is a letter from the physician stating the disability and you take it to your local National Forestry & Wildlife Division to get the pass. Each pass will admit up to 4 adults and children under 16 are always free.
This link answers all the questions:http://store.usgs.gov/pass/access.html
Monday, December 17, 2007
Asperger’s Syndrome Gets a Very Public Face
By TARA PARKER-POPE
Correction Appended
Heather Kuzmich has the neurological disorder known as Asperger’s syndrome. She is socially awkward, has trouble making eye contact and is sometimes the target of her roommates’ jokes.
But what makes the 21-year-old Ms. Kuzmich different from others with Asperger’s is that for the past 11 weeks, her struggle to cope with her disability has played out on national television.
She is one of 13 young women selected by the supermodel Tyra Banks to compete on the popular reality television show “America’s Next Top Model.” The addition of Heather Kuzmich to an otherwise superficial show has given millions of viewers an unusual and compelling glimpse into the little-understood world of Asperger’s.
The disorder, considered a form of autism, is characterized by unusual social interaction and communication skills. Aspies, as people with the condition like to call themselves, often have normal or above-average intelligence, but they have trouble making friends and lack the intuitive ability to gauge social situations. They fail to make eye contact and often exhibit a single-minded fixation that can be both bizarre and brilliant.
By definition, people with Asperger’s are outside the mainstream. Even so, in recent months the syndrome has been cast into the limelight. “Look Me in the Eye,” a memoir about living with Asperger’s by John Elder Robison, who once created special effects for the rock band Kiss, has been a best-seller. In August, the Pulitzer Prize-winning music critic Tim Page wrote a poignant article for The New Yorker about life with undiagnosed Asperger’s.
Mr. Robison says the popular appeal of these stories may be due, in part, to the tendency of people with Asperger’s to be painfully direct — they lack the social filter that prevents other people from speaking their minds.
“It’s important because the world needs to know that there are tremendous differences in human behavior,” said Mr. Robison, whose brother is the writer Augusten Burroughs. “People are all too willing to throw away someone because they don’t respond the way they want. I think books like mine tell the world that there is more to us than that.”
But while Mr. Robison and Mr. Page tell the story of coping with Asperger’s from the perspective of men in their 50s, Heather Kuzmich is just beginning her life as an adult with the disorder. And it is often painful to watch her transition from socially awkward adolescent to socially awkward adult.
A gifted art student from Valparaiso, Ind., she has a lean and angular look well suited to the fashion industry. But her beauty doesn’t mask the challenges of Asperger’s. The show requires her to live in a house with 12 other would-be models, and cattiness and backbiting ensue. Early in the show, she appears socially isolated, the girls whisper about her within earshot, and viewers see her crying on the phone to her mother.
One girl is frustrated when Heather, concentrating on packing a bag, doesn’t hear a request to move out of the way. At one point, the others laugh when they stake out their beds and Heather has no place to sleep.
“I wish I could get the joke,” Heather laments.
“You. You’re the joke,” retorts another model, Bianca, an 18-year-old college student who is from Queens.
But while Heather’s odd mannerisms separate her from her roommates, those same traits translate as on-the-edge high fashion in her modeling sessions. In interviews on camera, she often glances to the side, unable to hold eye contact. But Ms. Banks, the ’60s-era model Twiggy and the fashion photographer Nigel Barker, who all appear on the show, marvel at Heather’s ability to connect with the camera. The pop star Enrique Iglesias is so taken by her haunting looks that he chooses her for a featured role in a music video.
In an interview last week, Ms. Kuzmich played down the conflict with the other contestants, saying many more “civilized” exchanges weren’t broadcast. “They didn’t make fun of me that much,” she said.
She tried out for the show, she explained, partly to test her own limits. “It was a point in my life where I was thinking either Asperger’s was going to define me or I was going to be able to work around it,” she said.
To her surprise, she was voted the viewer favorite eight weeks in a row, making her one of the most popular contestants in the show’s four-and-a-half-year history. “I’m used to people kind of ignoring me,” she said in the interview. “At first I was really worried people would laugh at me because I was so very awkward. I got the exact opposite.”
Heather made it to the top five, but flubbed her lines while filming a commercial. Later, she got hopelessly lost in Shanghai, managing to meet with only one out of five fashion designers. She was eliminated last week, but has since made appearances on “Good Morning America” and “Access Hollywood.” She says she hopes to continue modeling and eventually become a national spokeswoman for Asperger’s.
“I had no idea it would be this big,” she said. “My mom is beside herself. She watched me when I was a kid not have any friends, and she saw me struggle. She’s glad people are starting to understand this.”
well@nytimes.com
Correction: December 12, 2007
The Well column in Science Times on Dec. 4, about Heather Kuzmich, a former contestant on “America’s Next Top Model” who has Asperger’s Syndrome, misidentified the city in which she got lost in one episode. It was Shanghai, not Beijing.
Correction Appended
Heather Kuzmich has the neurological disorder known as Asperger’s syndrome. She is socially awkward, has trouble making eye contact and is sometimes the target of her roommates’ jokes.
But what makes the 21-year-old Ms. Kuzmich different from others with Asperger’s is that for the past 11 weeks, her struggle to cope with her disability has played out on national television.
She is one of 13 young women selected by the supermodel Tyra Banks to compete on the popular reality television show “America’s Next Top Model.” The addition of Heather Kuzmich to an otherwise superficial show has given millions of viewers an unusual and compelling glimpse into the little-understood world of Asperger’s.
The disorder, considered a form of autism, is characterized by unusual social interaction and communication skills. Aspies, as people with the condition like to call themselves, often have normal or above-average intelligence, but they have trouble making friends and lack the intuitive ability to gauge social situations. They fail to make eye contact and often exhibit a single-minded fixation that can be both bizarre and brilliant.
By definition, people with Asperger’s are outside the mainstream. Even so, in recent months the syndrome has been cast into the limelight. “Look Me in the Eye,” a memoir about living with Asperger’s by John Elder Robison, who once created special effects for the rock band Kiss, has been a best-seller. In August, the Pulitzer Prize-winning music critic Tim Page wrote a poignant article for The New Yorker about life with undiagnosed Asperger’s.
Mr. Robison says the popular appeal of these stories may be due, in part, to the tendency of people with Asperger’s to be painfully direct — they lack the social filter that prevents other people from speaking their minds.
“It’s important because the world needs to know that there are tremendous differences in human behavior,” said Mr. Robison, whose brother is the writer Augusten Burroughs. “People are all too willing to throw away someone because they don’t respond the way they want. I think books like mine tell the world that there is more to us than that.”
But while Mr. Robison and Mr. Page tell the story of coping with Asperger’s from the perspective of men in their 50s, Heather Kuzmich is just beginning her life as an adult with the disorder. And it is often painful to watch her transition from socially awkward adolescent to socially awkward adult.
A gifted art student from Valparaiso, Ind., she has a lean and angular look well suited to the fashion industry. But her beauty doesn’t mask the challenges of Asperger’s. The show requires her to live in a house with 12 other would-be models, and cattiness and backbiting ensue. Early in the show, she appears socially isolated, the girls whisper about her within earshot, and viewers see her crying on the phone to her mother.
One girl is frustrated when Heather, concentrating on packing a bag, doesn’t hear a request to move out of the way. At one point, the others laugh when they stake out their beds and Heather has no place to sleep.
“I wish I could get the joke,” Heather laments.
“You. You’re the joke,” retorts another model, Bianca, an 18-year-old college student who is from Queens.
But while Heather’s odd mannerisms separate her from her roommates, those same traits translate as on-the-edge high fashion in her modeling sessions. In interviews on camera, she often glances to the side, unable to hold eye contact. But Ms. Banks, the ’60s-era model Twiggy and the fashion photographer Nigel Barker, who all appear on the show, marvel at Heather’s ability to connect with the camera. The pop star Enrique Iglesias is so taken by her haunting looks that he chooses her for a featured role in a music video.
In an interview last week, Ms. Kuzmich played down the conflict with the other contestants, saying many more “civilized” exchanges weren’t broadcast. “They didn’t make fun of me that much,” she said.
She tried out for the show, she explained, partly to test her own limits. “It was a point in my life where I was thinking either Asperger’s was going to define me or I was going to be able to work around it,” she said.
To her surprise, she was voted the viewer favorite eight weeks in a row, making her one of the most popular contestants in the show’s four-and-a-half-year history. “I’m used to people kind of ignoring me,” she said in the interview. “At first I was really worried people would laugh at me because I was so very awkward. I got the exact opposite.”
Heather made it to the top five, but flubbed her lines while filming a commercial. Later, she got hopelessly lost in Shanghai, managing to meet with only one out of five fashion designers. She was eliminated last week, but has since made appearances on “Good Morning America” and “Access Hollywood.” She says she hopes to continue modeling and eventually become a national spokeswoman for Asperger’s.
“I had no idea it would be this big,” she said. “My mom is beside herself. She watched me when I was a kid not have any friends, and she saw me struggle. She’s glad people are starting to understand this.”
well@nytimes.com
Correction: December 12, 2007
The Well column in Science Times on Dec. 4, about Heather Kuzmich, a former contestant on “America’s Next Top Model” who has Asperger’s Syndrome, misidentified the city in which she got lost in one episode. It was Shanghai, not Beijing.
All Information Series:
Time: 7:00 – 9:00pm
Location: AHA Offices – 4300 Hempstead Turnpike, Bethpage, NY 11714 (in the building where the NS-LIJ Center for Autism is located – off 135, next to the Embassy diner) – directions on the AHA Website – www.ahaNY.org
Thursday, January 3, 2008
Jennifer Cook, Esq. (Nassau/Suffolk Law Services)
OMRDD - Eligibility and Overcoming its Obstacles
Thursday, January 10, 2008
Rescheduled !!
Valerie Gaus, Ph.D.
CBT – Cognitive Behavior Therapy
Why is it the best approach to use with ASD?
Lecture, Q & A and Book signing of her NEW book!
Thursday, January 31, 2008
JUMP! Jobs Are Us Mentoring Program.
What are we up to? How are the committees progressing?
Jump is an employment initiative that AHA has begun. Any interested parents or family members are welcome to come to the meeting and listen, or participate.
Location: AHA Offices – 4300 Hempstead Turnpike, Bethpage, NY 11714 (in the building where the NS-LIJ Center for Autism is located – off 135, next to the Embassy diner) – directions on the AHA Website – www.ahaNY.org
Thursday, January 3, 2008
Jennifer Cook, Esq. (Nassau/Suffolk Law Services)
OMRDD - Eligibility and Overcoming its Obstacles
Thursday, January 10, 2008
Rescheduled !!
Valerie Gaus, Ph.D.
CBT – Cognitive Behavior Therapy
Why is it the best approach to use with ASD?
Lecture, Q & A and Book signing of her NEW book!
Thursday, January 31, 2008
JUMP! Jobs Are Us Mentoring Program.
What are we up to? How are the committees progressing?
Jump is an employment initiative that AHA has begun. Any interested parents or family members are welcome to come to the meeting and listen, or participate.
Opportunities for Youth
NATIONAL YOUTH LEADERSHIP NETWORKNational Youth Leadership Network (NYLN) is looking for new leaders! And we want you to apply to serve on our Governing Board! NYLN is a non-profit organization run by young people with disabilities. We empower all young people to reach their maximum potential. read more: http://www.heath.gwu.edu/node/552
KASA'S WEBSITE IS LOOKING FOR YOUTH WHO WANT TO EXPRESS THEMSELVES. Do you write poetry, have a success at getting an accommodation at school or a job? Learn something about Voc. Rehab or a summer camp you like? Or do you have some advice to offer the rest of us on dating and relationships? KASA is always accepting written contributions to the website if you are an "expert" on or have had an experience with one of these subjects: school, work, civil rights, prevention &recovery, health, sports, leisure & recreation, dating & relationships, technology, or transportation. Write to ortizn@fvkasa.org and explain your interest.
UNDERGRADUATE RESEARCH PLACEMENTS:Paid Summer 2008 Undergrad Research Placements!!!The National Science Foundation is currently seeking students to apply fortheir Research Placements. Over 600 programs -Undergraduate REU and OtherSummer Research Opportunities: See http://www.agep.us/summer.asp or http://www.igert.org/summer.asp
AAPD'S SUMMER INTERNSHIP PROGRAMSThese PAID internships in our nation's capital are incredible opportunities for college students with disabilities to further their educations and careers with invaluable experience and contacts in politics, law, technology, and employment in D.C. All applicants must be college or university students with disabilities, enrolled in an associate's or bachelor's degree program, when they begin the internship program. More information can be found at http://www.aapd.com/internships/internship08/internInfo08.htm
DEADLINE: December 14,
2007CAPTAIN PLANET FOUNDATION ENVIRONMENTAL GRANTSThe Captain Planet Foundation funds hands-on environmental projects to encourage youth around the world to work individually and collectively to solve environmental problems in their neighborhoods and communities. Maximum Award: $2,500. For more information go to http://www.captainplanetfdn.org/grants.htmlDEADLINE:December 31, 2007.
C-SPAN StudentCamC-SPAN StudentCam is an annual documentary competition that encourages students to think seriously about issues that affect our communities and our nation. C-SPAN StudentCam invites students to identify a current political topic of interest and produce a short (up to ten minute) video documentary which creatively explores an issue while integrating C-SPAN programming. The competition is open to students in grades 6 - 12. For more information go to http://www.studentcam.org DEADLINE: Dec 31, 2007
SMART KIDS WITH LEARNING DISABILITIES YOUTH ACHIEVEMENT AWARDNominations for the fourth annual Smart Kids with Learning Disabilities Youth Achievement Award are due January 31, 2008. This year's $1,000.00 award recognizes the great strengths of young people with LD and/or ADHD. The award will be given to a student (high school or younger) with documented learning disabilities and/or ADHD who has demonstrated initiative, talent and determination resulting in a notable accomplishment in any field-including art, science, math athletics, or community service. Honorable mentions will also be awarded. More information can be found at http://www.smartkidswithld.org/award.html DEADLINE: January 31, 2008
INTERNATIONAL YOUNG ECO-HERO AWARDSThe Action for Nature International Young Eco-Hero Awards recognize the individual accomplishments of young people whose personal actions significantly improve the environment. Maximum Award: $500. Eligibility: youths aged 8-16. http://www.actionfornature.org/eco-hero/ecoheroawards.htmlDEADLINE: February 28,
2008STUDENT POSTER COMPETITIONThe Eighth Annual Multiple Perspectives on Access, Inclusion & Disability conference is seeking undergraduate and graduate student research; performance, writing, visual art; or applied and community service projects for a poster session and reception on Tuesday April 22, 2008. Please visit: http://ada.osu.edu/conferences for more information on the conference. Posters that relate to this year's conference themes "looking back and thinking ahead" will be given preference in the review process.DEADLINE FOR APPLICATION: March 21, 2008:
LEMELSON-MIT INVENTEAMS GRANTSLemelson-MIT InvenTeams Grants foster inventiveness among high school students. InvenTeams composed of high school students, teachers and mentors are asked to collaboratively identify a problem that they want to solve, research the problem and develop a prototype invention as an in-class or extracurricular project. Maximum Award: $10,000 For more information go to http://web.mit.edu/inventeams/about.htmlDEADLINE: April 25, 2008.
KASA'S WEBSITE IS LOOKING FOR YOUTH WHO WANT TO EXPRESS THEMSELVES. Do you write poetry, have a success at getting an accommodation at school or a job? Learn something about Voc. Rehab or a summer camp you like? Or do you have some advice to offer the rest of us on dating and relationships? KASA is always accepting written contributions to the website if you are an "expert" on or have had an experience with one of these subjects: school, work, civil rights, prevention &recovery, health, sports, leisure & recreation, dating & relationships, technology, or transportation. Write to ortizn@fvkasa.org and explain your interest.
UNDERGRADUATE RESEARCH PLACEMENTS:Paid Summer 2008 Undergrad Research Placements!!!The National Science Foundation is currently seeking students to apply fortheir Research Placements. Over 600 programs -Undergraduate REU and OtherSummer Research Opportunities: See http://www.agep.us/summer.asp or http://www.igert.org/summer.asp
AAPD'S SUMMER INTERNSHIP PROGRAMSThese PAID internships in our nation's capital are incredible opportunities for college students with disabilities to further their educations and careers with invaluable experience and contacts in politics, law, technology, and employment in D.C. All applicants must be college or university students with disabilities, enrolled in an associate's or bachelor's degree program, when they begin the internship program. More information can be found at http://www.aapd.com/internships/internship08/internInfo08.htm
DEADLINE: December 14,
2007CAPTAIN PLANET FOUNDATION ENVIRONMENTAL GRANTSThe Captain Planet Foundation funds hands-on environmental projects to encourage youth around the world to work individually and collectively to solve environmental problems in their neighborhoods and communities. Maximum Award: $2,500. For more information go to http://www.captainplanetfdn.org/grants.htmlDEADLINE:December 31, 2007.
C-SPAN StudentCamC-SPAN StudentCam is an annual documentary competition that encourages students to think seriously about issues that affect our communities and our nation. C-SPAN StudentCam invites students to identify a current political topic of interest and produce a short (up to ten minute) video documentary which creatively explores an issue while integrating C-SPAN programming. The competition is open to students in grades 6 - 12. For more information go to http://www.studentcam.org DEADLINE: Dec 31, 2007
SMART KIDS WITH LEARNING DISABILITIES YOUTH ACHIEVEMENT AWARDNominations for the fourth annual Smart Kids with Learning Disabilities Youth Achievement Award are due January 31, 2008. This year's $1,000.00 award recognizes the great strengths of young people with LD and/or ADHD. The award will be given to a student (high school or younger) with documented learning disabilities and/or ADHD who has demonstrated initiative, talent and determination resulting in a notable accomplishment in any field-including art, science, math athletics, or community service. Honorable mentions will also be awarded. More information can be found at http://www.smartkidswithld.org/award.html DEADLINE: January 31, 2008
INTERNATIONAL YOUNG ECO-HERO AWARDSThe Action for Nature International Young Eco-Hero Awards recognize the individual accomplishments of young people whose personal actions significantly improve the environment. Maximum Award: $500. Eligibility: youths aged 8-16. http://www.actionfornature.org/eco-hero/ecoheroawards.htmlDEADLINE: February 28,
2008STUDENT POSTER COMPETITIONThe Eighth Annual Multiple Perspectives on Access, Inclusion & Disability conference is seeking undergraduate and graduate student research; performance, writing, visual art; or applied and community service projects for a poster session and reception on Tuesday April 22, 2008. Please visit: http://ada.osu.edu/conferences for more information on the conference. Posters that relate to this year's conference themes "looking back and thinking ahead" will be given preference in the review process.DEADLINE FOR APPLICATION: March 21, 2008:
LEMELSON-MIT INVENTEAMS GRANTSLemelson-MIT InvenTeams Grants foster inventiveness among high school students. InvenTeams composed of high school students, teachers and mentors are asked to collaboratively identify a problem that they want to solve, research the problem and develop a prototype invention as an in-class or extracurricular project. Maximum Award: $10,000 For more information go to http://web.mit.edu/inventeams/about.htmlDEADLINE: April 25, 2008.
Common Children's Vaccine Recalled
By Mike Stobbe and Linda A. Johnson for the Associated Press.
http://www.theledger.com/article/20071212/APF/712120846
More than a million doses of a common vaccine given to babies as young as 2 months were being recalled Wednesday because of contamination risks, but the top U.S. health official said it was not a health threat.
The recall is for 1.2 million doses of the vaccine for Hib, which protects against meningitis, pneumonia and other serious infections, and a combination vaccine for Hib and hepatitis B. The vaccine is recommended for all children under 5 and is usually given in a three-shot series, starting at 2 months old.
Drug maker Merck & Co., which announced the recall after testing this week showed a sterility problem in a Pennsylvania factory, said concerned parents should contact their child's doctor.
"The potential for contamination of any individual vaccine is low,"
said Merck spokeswoman Kelley Dougherty.
Dr. Julie Gerberding, head of the Centers for Disease Control and Prevention, echoed that in a news conference.
"This is not a health threat in the short run, but it is an inconvenience," she said.
Merck produces about half of the nation's annual supply of 14 million doses of Hib vaccine.
Barbara Kuter, executive director of pediatric medical affairs for Merck, told The Associated Press that because of the contamination, the company's production line has been shut down for at least nine months.
"Manufacture of vaccines is pretty complicated, and we have to basically make some changes in the process," then get approval from the Food and Drug Administration before resuming production and shipments, Kuter said. Merck hopes to restart production in the fourth quarter of 2008, she said.
"It's likely that there's going to be a shortage of this product,"
Kuter said, adding that the impact on the public is unclear because the other company making the vaccine in the U.S., Sanofi Pasteur, may be able to produce more.
Health officials said they already are talking about prioritizing shots for American Indian and Alaska Native children, who are considered at higher risk for Hib-caused illnesses, said Dr. Anne Schuchat, director of the CDC's National Center for Immunization and Respiratory Diseases.
Health officials said they did not know how many of the 1.2 million doses were administered to children.
The recalled doses are considered potent, so children who got vaccine from the recalled lots will not have to be revaccinated, Schuchat said.
Parents will probably be concerned, CDC officials acknowledged. Should the vaccine later prove contaminated, health officials believe most children will experience, at worst, a skin irritation around the vaccination site.
Problems could be worse for children with compromised immune systems.
Such problems would have appeared within one week of the vaccination, Schuchat said, adding that there have been no reports suggesting vaccine contamination so far.
The contamination involved unspecified equipment used in making the vaccine, which involves taking concentrated Hib virus, diluting it and combining it with other agents. Kuter said that during a routine evaluation of Merck's West Point, Pa., vaccine plant, a sterility test determined that the equipment was contaminated with a bacteria called Bacillus cereus, or B.
cereus.
It is a spore-making microorganism commonly associated with food poisoning and has caused diarrhea and vomiting in people who eat contaminated foods.
"It's one of the most common organisms" around, Kuter said.
The recall is likely to heighten a debate over childhood vaccines and their safety and whether too many are required. Some parents are distrustful and suspect some vaccines of being linked to autism, although scientific studies have not shown such a connection.
+ Read more: http://www.theledger.com/article/20071212/APF/712120846
http://www.theledger.com/article/20071212/APF/712120846
More than a million doses of a common vaccine given to babies as young as 2 months were being recalled Wednesday because of contamination risks, but the top U.S. health official said it was not a health threat.
The recall is for 1.2 million doses of the vaccine for Hib, which protects against meningitis, pneumonia and other serious infections, and a combination vaccine for Hib and hepatitis B. The vaccine is recommended for all children under 5 and is usually given in a three-shot series, starting at 2 months old.
Drug maker Merck & Co., which announced the recall after testing this week showed a sterility problem in a Pennsylvania factory, said concerned parents should contact their child's doctor.
"The potential for contamination of any individual vaccine is low,"
said Merck spokeswoman Kelley Dougherty.
Dr. Julie Gerberding, head of the Centers for Disease Control and Prevention, echoed that in a news conference.
"This is not a health threat in the short run, but it is an inconvenience," she said.
Merck produces about half of the nation's annual supply of 14 million doses of Hib vaccine.
Barbara Kuter, executive director of pediatric medical affairs for Merck, told The Associated Press that because of the contamination, the company's production line has been shut down for at least nine months.
"Manufacture of vaccines is pretty complicated, and we have to basically make some changes in the process," then get approval from the Food and Drug Administration before resuming production and shipments, Kuter said. Merck hopes to restart production in the fourth quarter of 2008, she said.
"It's likely that there's going to be a shortage of this product,"
Kuter said, adding that the impact on the public is unclear because the other company making the vaccine in the U.S., Sanofi Pasteur, may be able to produce more.
Health officials said they already are talking about prioritizing shots for American Indian and Alaska Native children, who are considered at higher risk for Hib-caused illnesses, said Dr. Anne Schuchat, director of the CDC's National Center for Immunization and Respiratory Diseases.
Health officials said they did not know how many of the 1.2 million doses were administered to children.
The recalled doses are considered potent, so children who got vaccine from the recalled lots will not have to be revaccinated, Schuchat said.
Parents will probably be concerned, CDC officials acknowledged. Should the vaccine later prove contaminated, health officials believe most children will experience, at worst, a skin irritation around the vaccination site.
Problems could be worse for children with compromised immune systems.
Such problems would have appeared within one week of the vaccination, Schuchat said, adding that there have been no reports suggesting vaccine contamination so far.
The contamination involved unspecified equipment used in making the vaccine, which involves taking concentrated Hib virus, diluting it and combining it with other agents. Kuter said that during a routine evaluation of Merck's West Point, Pa., vaccine plant, a sterility test determined that the equipment was contaminated with a bacteria called Bacillus cereus, or B.
cereus.
It is a spore-making microorganism commonly associated with food poisoning and has caused diarrhea and vomiting in people who eat contaminated foods.
"It's one of the most common organisms" around, Kuter said.
The recall is likely to heighten a debate over childhood vaccines and their safety and whether too many are required. Some parents are distrustful and suspect some vaccines of being linked to autism, although scientific studies have not shown such a connection.
+ Read more: http://www.theledger.com/article/20071212/APF/712120846
Disorder or Identity? Do “neurodiverse” kids need curing—or a culture of their own?
by Juliette Guilbert
When my daughter was six years old and couldn’t spell her own first name or count five balloons on a math worksheet, my friends said soothing things.
“It will come,” they said. “She’ll be fine. She’s clearly so bright.”
A year later, when Aurora was desperately struggling in school and newly diagnosed with attention-deficit hyperactivity disorder (moderate-to-severe), dyslexia (mild-to-moderate), fine motor delays (severe), and auditory processing issues (indeterminate), some helpful types were still determined to think positive.
“You just have to find her gift,” they said. “That will build her self-esteem. Then she’ll be fine.”
“Yes, of course, all children have gifts,” I repeated dully, choking back the retort that no matter how gifted a person is at music or macramé, she has to know how to read and do long division in order to be “fine.”
Only to my closest friends did I voice my darkest, most secret thought: that in no area did my adored child show the least sign of any gift, talent, or even average degree of competence. Hopelessly uncoordinated, with “soft neurological signs,” she failed spectacularly at sports. She couldn’t read. Fine motor problems ruled out art as a path to self-esteem. She loved to listen to music, but coordination and attention problems got in the way of learning to make it. She couldn’t clap a simple 4/4 rhythm, and her piano teacher fired her for being hyper and unfocused. She couldn’t do puzzles, build with blocks, color inside the lines, or play a board game. She was being bullied because she couldn’t read other kids’ nonverbal social cues. And getting her ready for school in the morning was a tear-stained, operatic drama.
But we weren’t yet ready to embrace a medical diagnosis (ADHD was the invention of drug-pushing Big Pharma, right?). So we put her in a mellow hippie school where nobody gave her demerits when she couldn’t sit still, and waited for the gifts to emerge. We tried countless alternative remedies and maintained our nonconformist skepticism about the status of ADHD as a legitimate disability. But I think the real reason behind our skepticism, other than native cussedness, was that to call our child disabled would be to condemn her to a lifetime of hardship. If her situation were a kind of temporary disease state, correctable if she consumed enough fish oil, or jumped up and down on a trampoline while reciting the alphabet, or ate not one molecule of artificial color or flavor, she might get better. She might become merely quirky or exuberant, not impaired.
But before long, it became pretty clear that the problem was not going to simply fade away. Toward the end of her first-grade year, we were working on math homework together at the dining room table. The problem was 0 + 1. Aurora couldn’t produce the answer on her own, so I got out a Lego.
“Now, sweetie,” I said. “How many Legos are there on the table right now?”
“Zero,” she said.
“Okay, good.” I put the Lego on the table in front of her. “Now how many Legos are on the table?”
“Zero!” she crowed happily, looking at a spot on the wall somewhere above my head.
There was a time when I might have screamed at her to snap out of it, to pay attention and get with the program—not out of anger, but out of fear. Or at least the anger that comes from fear. But suddenly, I was struck by the realization that she really, truly couldn’t help it. She could not focus well enough even to understand what she was being asked to do. And even if she one day developed a knack for Model U.N. or playing the accordion, this child was going to need help—serious help, years of help, thousands of dollars’ worth of help—to learn the basic math and reading skills that would allow her to function as an adult. Sitting there at the dining room table with a seven-year-old who, despite documented high intelligence, could not successfully count one Lego, I accepted the label: My kid had a disability.
I got down to business, pursuing treatments and therapies aimed at mitigating that disability. I told her teachers she was ADHD and had dyslexia and possibly other learning disabilities (as if they were surprised). And when she started asking awkward questions like “Mom, am I dumb?” I answered honestly: “No, you have a disability that makes some things harder for you to do. Just like how having cerebral palsy made it harder for your friend Grace to walk.”
It was the label that got Aurora what she needed in order to learn to read, count Legos, sit still long enough to draw a picture, and refrain from spitting on her desk and running up to horrified children at recess to give them great big hugs. And it was the label—not the vague promise of unnamed “gifts”—that allowed her to salvage something of her self-esteem when she was struggling to keep up with the lowest reading group, the lowest math group, and unable to kick a ball or make sense of her classmates’ social interactions. I still expected her to try her best, but when she simply couldn’t hack it, she believed me when I told her it was because she was disabled, not stupid, lazy, naughty, or weird.
By this past fall, the start of third grade—after nearly two years of living with the label—she was doing somewhat better. During the course of second grade, an intensive program for dyslexics got her reading. She was making friends, participating in class, getting excited about Mesopotamia and optical illusions. But there were still major issues with spelling, math, and handwriting. Her confidence was better, but school and homework still created a good deal of anxiety. I geared up for another round of neuropsych testing, hired a math tutor, met with teachers, drilled with flash cards. Helping Aurora was kind of like having a second job, but we were making progress and I felt, if not wholly optimistic, at least not entirely despairing. The idea of “gifts” had been pushed out of my mind, but at least now she could spell her name—first, last, and (sometimes) middle.
Then I happened to speak to an old friend, Martin, whose son Sam had recently been diagnosed with Asperger’s syndrome, a disorder on the milder end of the autism “spectrum.” (Names have been changed.) Martin’s experience was similar to mine: wondering what was wrong through the preschool years; inconclusive tests and failed hypotheses; and then an official diagnosis that gave rise to a plan of action. Martin started Sam on an intensive program of behavioral therapy called Applied Behavior Analysis, or ABA, aimed at improving Sam’s social skills and—Martin hoped—helping him overcome the cognitive deficits that had already become apparent. Sam was technically the best reader in his first-grade class—hyperlexia is a common Asperger’s trait—but he was unable to comprehend the plot of a simple story or Bugs Bunny cartoon. ABA is a widely used approach, based on the behaviorist school of psychology, that many parents of autistics credit with bringing about great improvements in their children’s ability to function more normally. ABA therapists break down desired “behaviors” into small steps and teach them by means of prompting and positive reinforcement. A typical program requires twenty to forty hours a week of therapy; Sam will do eighty hours a month for at least two years.
“But some people think you shouldn’t do this sort of thing,” Martin said.
“Really?” I was astonished. “Who?”
“There’s a movement in autism circles that would say we’re just trying to change him for our own selfish reasons,” he said. “That you shouldn’t treat autism, that it’s an identity, not a disorder, and you should just accept it and love the kid for who he is.”
I went online and soon found that he was right. And it isn’t just autism: An identity politics had also been growing up around dyslexia, ADHD, and other developmental and learning disabilities, springboarding off the disability rights and deaf culture movements. In the same way that many deaf community activists reject the notion of deafness as a deficit and speak against cochlear implants on the grounds that they enact “cultural genocide” on deaf culture, the “neurodiversity” movement denies that cognitive differences are disabilities, revisioning them as part of the grand continuum of human neurological variation, with strengths as well as deficits (in other words, gifts). In its more radical manifestation, the movement is steeped in the rhetoric of identity politics, staking out territories of “autistic culture” and “LD pride,” poking fun at “neurotypicals” or “NTs” (a term coined in the autism rights community to describe non-autistics). These new neurodiversity radicals make the bold claim that rather than trying to “fix” them, society should simply accept (and accommodate) them.
It was a shock to discover a subculture intent not on denying my child’s impairment, as I had initially done, but on celebrating it, redefining it as a benign “difference,” analogous to being an ethnic or sexual minority. It was a shock because my child (and Martin’s child) seemed so clearly impaired. It was a shock because not so long ago, people who couldn’t learn the usual things in the usual ways were subjected not to therapy and medication but to humiliation and abuse.
My father, who was born in 1930, had a very similar cognitive profile to Aurora’s. He had terrible trouble in school and was always on the verge of being held back. Like Aurora, he didn’t learn to tie his shoes until he was seven—and in the 1930s, they did not have Velcro. His teachers knew he was bright, so they called him lazy. His report cards came home stamped “Shows little effort” so frequently that his parents nicknamed him “Little Effort.” He dropped out of high school, joined the Army, and didn’t graduate from college until he was forty. (He then went on to become an aeronautical engineer and worked on the first lunar landing and Space Shuttle projects, as I am fond of telling my currently math-challenged daughter.) Compared to “Little Effort,” calling Aurora disabled seemed like a step toward a more humane, compassionate understanding of cognitive difference.
But now, after just a couple of decades of the medical model of learning problems, a major backlash seemed to have developed. That backlash demonizes “NT” parents and scientists as destroyers of identity and self-esteem. Mainstream autism advocates and parents trying to help their kids are labeled with their own disparaging moniker: curebies.
I wondered if one day Aurora would vilify me as a “curebie” who ruined her childhood with treatments aimed at altering her very being, and who saddled her with a soul-destroying sense of her own defectiveness. At the very least, it seemed that the neurodiversity movement could make excellent fodder for adolescent rebellion. But I had to ask myself: Did they have a point? I had practically killed myself for three years trying to help my daughter by fixing her. Was I going about this all wrong?
The special-needs parenting section at the bookstore is full of titles like The Gift of Dyslexia, The Gift of ADHD, and Autism and the God Connection—books that argue that these conditions are not pathologies, but neurological variations that produce people who are more creative, more intuitive, more visual, more able to “think outside the box,” or more spiritual. Many argue that conventional education and the medical management of these conditions can be more devastating than the conditions themselves, blunting the gifts and producing a self-fulfilling prophecy of misbehavior and failure.
They often trot out famous geniuses supposedly afflicted with one or more of these conditions: Einstein is claimed by autism, dyslexia, and ADHD. Other (speculative) favorites include Thomas Edison (ADHD), Benjamin Franklin (ADHD), Thomas Jefferson (Asperger’s), and Steven Spielberg (Asperger’s). Some New Agers claim that ADHD and autistic kids have simply evolved to a higher spiritual plane and possess psychic powers; UFO enthusiasts speculate that they are alien hybrids. To read some of these books, you would think the inability to learn to read, add, and subtract were the greatest thing that ever happened to my kid.
Dr. Edward Hallowell was one of the originators of the notion that ADHD may not be entirely a bad thing. A psychiatrist in Sudbury, Massachusetts, and New York City specializing in the condition, he had a major role in introducing it to the popular consciousness, coauthoring several books on it (including Driven to Distraction, 1994) and founding the Hallowell Center, a chain of clinics that use a “strengths-based” approach to diagnosing and treating ADHD and LD.
While Hallowell doesn’t deny that ADHD can cause a person some pretty major problems—he makes his living treating the condition as a disorder—he also has one foot firmly in the “gifts” camp. His website states, “We see ADD, dyslexia, and other learning issues as potential gifts that can be difficult to unwrap.” I decided it was time to open my mind to this concept. After all, the idea of ADHD/LD as entirely a disability had helped Aurora, but we weren’t exactly home free. So I called up Hallowell to see if I could get some clarification on what her gifts might be, and how to unwrap them.
When he tells a young patient he has ADHD, Hallowell told me, he doesn’t present it as a sickness or a defect. “I tell them I have great news, that they have a Ferrari brain,” he said. “I tell them that they are going to win a lot of races, but that the one problem is that they have Chevrolet brakes. And I tell them that I am a brake specialist. They leave my office saying, ‘I’ve got a gift, this incredible brain.’ ”
Hallowell acknowledged that the Ferrari metaphor may not stand up in the court of scientific evidence. But he assured me that it’s not just empty, self esteem-boosting rhetoric. “I don’t bullshit kids,” he said. “I believe it with all my heart and soul. A lot of experts in the field quibble that there is no data to prove that ADHD people are more creative. I say, fine, go count your beans. That’s not my job. The point is not can we prove this, but that we will give these people much better treatment if we approach them this way. I have been treating ADD for twenty-five years, and my clinical experience is worth something, and I happen to believe that people with ADD are more creative, intuitive and enthusiastic.”
But is it a disability or a “difference”? Hallowell himself has both ADHD and dyslexia, and pointed out that while he has faced hardship because of these conditions and remains a slow reader, he makes his living writing books. “I don’t like this either/or way of looking at it,” he said. “I say it’s a way of being that has advantages and disadvantages. The prisons are full of people with untreated ADD. Obviously if it’s not treated right it’s a curse. But if it’s handled right you end up like David Neeleman, the CEO of JetBlue airlines.” Neeleman likes to say that if he could take a “magic pill” to get rid of his ADHD, he wouldn’t do it: He credits the disorder with giving him the originality it took to invent the paperless airplane ticket.
A skeptical bean counter might say that there’s little reason to believe that Neeleman’s ADHD and his creativity are necessarily linked. Joel Nigg, a professor of psychology at Michigan State University and the author of What Causes ADHD? Understanding What Goes Wrong and Why, is not dismissive of the notion that those diagnosed with ADHD and autism might have gifts, but he said that most studies have failed to find any.
“The most typical thing people want to say related to ADHD is creativity,” Nigg said. “There is very little literature on that, and there really isn’t any good evidence of it. There’s lots of speculation. A study came out this year that found a little more creativity in the ADHD group, but the kids couldn’t apply it. They could recognize more solutions but didn’t have the mental control to apply those solutions.”
Indeed, where evidence of a link between creativity and ADHD symptoms has been found, that relationship has been complex. A 2006 study by researchers at New Zealand’s University of Canterbury found that forty percent of a sample of highly creative children displayed mild ADHD symptoms—a much higher percentage than would be found in the general population—but none met the full criteria for ADHD. According to questionnaires filled out by their parents and teachers, none was impaired by their symptoms. (Significant impairment is one of the official criteria for diagnosing ADHD.) It seems quite possible that elevated inattentiveness may be a characteristic of some restlessly creative minds but that ADHD as a pathology is something else altogether.
Similar research aims to pin down the cognitive strengths of autistics. In 2007, Laurent Mottron, a professor of psychiatry at the University of Montreal, led a group of American and Canadian researchers who gave autistic and normal children two of the most common IQ tests: the Wechsler scales, which is heavily language-based, and Raven’s Progressive Matrices, which asks subjects to complete complex visual patterns in a wholly nonverbal format. The non-autistic kids had similar scores on both tests. But while no autistic child scored in the “high intelligence” range of Wechsler, one-third did on Raven’s. Similarly, one-third of autistics scored in the mentally retarded range on Wechsler, but only one in twenty did on Raven’s. The researchers were able to reproduce the results with a group of autistic and normal adults. The implications are startling: At least some autistic people previously considered intellectually deficient may, in fact, be in the normal or even gifted range when it comes to abilities such as memory and abstract reasoning. One autistic subject who was deemed mentally retarded by the Wechsler scored in the 94 th percentile on Raven’s.
Mottron has credited Michelle Dawson, an autistic colleague with a high school education, with bringing about a paradigm shift in his research. A former postal worker, Dawson began working with Mottron as a research partner after the two met on a film project about autism; he was astonished to find that she could present cogent (and scathing) critiques of his research methodology and conclusions.
Dawson has become a controversial figure in mainstream autism circles because of her anti-ABA activism. For her, evidence of autistics’ cognitive strengths fuels a fierce animus against any therapy aimed at making them less autistic. She has challenged ABA on ethical as well as scientific grounds. In 2006, she submitted testimony to the Supreme Court of Canada in a lawsuit brought by parents intent on forcing the government to pay for their children’s therapy. Dawson argued that since children cannot consent to behavioral therapy, a rigorous ethical review of ABA’s goals and practices—with input from autistics as well as scientists, ethicists, and legal scholars—must be undertaken before the Canadian government can endorse it. When it ruled against the families, the court cited Dawson’s testimony.
To be sure, ABA does have something of a checkered past. Its originator, clinical psychologist Ole Ivar Lovaas, originally used “aversives”—shouting, striking, or electric shock—in tandem with positive reinforcement to produce desired behavior in autistic children. Aversives have been largely abandoned, but later researchers have found that Lovaas’ landmark 1987 study on ABA, which claimed that a significant proportion of his autistic subjects had become “indistinguishable” from their non-autistic peers, overstated the technique’s efficacy. (Nonetheless, a 2005 study found ABA more effective than other approaches for improving autistic children’s cognitive, language, and social skills.)
Anti-ABA activists like Dawson contend that a successful ABA graduate has simply been taught to suppress his natural modes of learning about and interacting with the world—behaviors such as self-stimulation, or “stimming” (rocking, flapping, etc.), and obsessive interest in arcane topics, seemingly pointless actions to neurotypicals. “While this lacks a bit of nuance, Raven can be said to measure the ability of a person to learn,” Dawson told me in an e-mail. “Clearly, as evidenced by our study and many others, autistics can learn well, and sometimes exceptionally, in ways not only distant from the practices in A.B.A. programs but actively discouraged or extinguished [in them].”
While Dawson’s ability to master scientific discourse would seem to be further proof of her claims about autistic intelligence, her intellectual achievements have also caused parents of autistics to question her autistic status—and her right to make pronouncements about their severely impaired children. These parents argue that acceptance and accommodation may make sense for high-functioning autistics with largely social problems, but not for kids who can’t use the toilet, who injure themselves or others, or who may not be able to live independently as adults.
Dawson’s supporters retort that it can be difficult to determine a person’s degree of autistic impairment by reading his or her written communications. Three (unnamed) site administrators at autistics.org, a hub of radical autistic self-advocacy, collectively posted a response to Dawson’s critics in which they asserted that (despite their ability to write coherent prose and maintain a website) all three have been called things like “low-functioning,” “mentally retarded,” or “unsalveagable” by professionals. All have communicative speech problems, none is fully toilet-trained, and all are visibly autistic. “We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss, and tic,” they wrote. “Two of us don’t even believe in the distinction between high- and low-functioning, and neither does Michelle Dawson.”
Even if you accept that low-functioning autistics may have special cognitive powers, or ADDers more creativity, it’s reasonable to argue that they may still need a lot of help—perhaps even medication or behaviorism—to be able to use their skills and make their way in the world. Parents charge that while the neurodiversity movement is ready with criticisms of available therapies, it offers little in the way of practical solutions to help them and their children cope with life.
There remains the compelling insight that even the most impaired-seeming person may have abilities, perceptions, and feelings “normal” people can scarcely imagine. Indeed, through the use of computer technology, nonverbal, low-functioning autistics who might have been institutionalized in an earlier era have found the means to convey their awareness and intelligence to the world. One, Amanda Baggs, became an Internet sensation last year after posting a short film on YouTube titled “In My Language,” which depicts her routine stimming behavior, accompanied by her own written commentary voiced by a computer. Although Baggs cannot speak, her typed communication reveals her to be an aware, intelligent, and witty person. She later guest-blogged for Anderson Cooper.
For Baggs and others like her, it’s all about the environment: When she has access to a keyboard, she’s viewed as intelligent. Without one, she appears to be mentally retarded. She does not make eye contact with others but has said that when she is “talking” (via computer) to her autistic friends, she feels “totally normal.”
According to some ADHD iconoclasts, a different social or educational environment could provide a similar sense of normality for ADDers. In addition, in some environments, a behavior that appears to be a deficit (extreme impulsiveness, for instance) could be an asset. In his book The Edison Gene: ADHD and the Gift of the Hunter Child (2003), Thom Hartmann, the liberal talk show host and author, argues that ADHD represents the genetic traces of hunter-gatherer civilization, left over in the human genome after the transition to agricultural civilization. He came up with the idea, he writes, as a metaphor for understanding the way ADHD minds work: Unlike the steady, methodical, team-playing “farmers” (neurotypicals), “hunters” are independent, visual, tireless, impulsive and risk-taking, and constantly “scanning” their surroundings for prey and enemies.
With the discovery of a specific gene variation linked to a large proportion of ADHD cases, though, the metaphor took on scientific substance: Hartmann contends that there is now genetic evidence that ADHD could be an adaptive (evolutionarily good) rather than a maladaptive trait. He cites a 2002 study by researchers at the University of California-Irvine that found that the allele, which makes brain receptors for dopamine, arose as a spontaneous mutation between 10,000 and 40,000 years ago. This mutation may have provided ancient hunter-gatherers with an evolutionary advantage that subjected it to positive selection—an advantage that may have persisted, in certain circumstances, even to the present day, thus accounting for its continued frequency. (One recent study found that the prevalence of ADHD among eight- to fifteen-year-olds was 8.7 percent.)
An appealing idea—except for one small problem: When I read the book, Hartmann’s list of “hunter” traits seemed to have little to do with the reality of my ADHD child. More than one mainstream ADHD expert has joked that he would not want to go hunting with any of his patients, and I was inclined to agree with them. Aurora’s inattentiveness and hyperactivity has caused me minor physical injury on more than one occasion (and that’s without putting a spear in her hands). She might be constantly scanning her environment, but she also has poor working memory and terrible motor skills (common in people with ADHD), traits that would make her easy prey for a saber-toothed tiger. And while, as Hartmann notes, some people with ADHD have the ability to “hyperfocus” in certain highly stimulating situations, such as a mastodon hunt, my daughter does not appear to possess this potentially useful trait.
On the other hand, I could tell from reading the book that Hartmann was a ferociously intelligent Renaissance man (he’s also written books on global warming, Thomas Jefferson, and the war on the middle class), and I liked the idea of a smart, iconoclastic layman challenging the conventional scientific wisdom on ADHD. I also appreciated his humane attitude toward children with “issues,” born of much personal experience: He has a son with ADHD, and in fact has it himself and failed spectacularly in a conventional school environment. The book’s practical recommendations are sensible enough—among them, little or no television, plenty of play and exercise, essential fatty acids, a school environment tolerant of and tailored to your child’s special needs.
The only problem was that I’d already observed most of them since Aurora was a baby, to little avail. One recommendation from Hartmann I hadn’t yet tried, though, was to provide her with a positive-spin narrative of her condition.
“Instead of thinking of an Edison gene child as having a genetic mental problem or ‘disorder,’ ” he writes, “tell her—and yourself—that she is the descendant of the explorers who moved across the world discovering and populating new lands and of people like Thomas Edison, who invented all sorts of ways to make life better, healthier, or easier. … Point out the positives of his genetic trait: energy, enthusiasm, creativity, the ability to think on your feet, fearlessness.” By pointing out my child’s kinship with geniuses like Edison and Ben Franklin, both of whom were expelled from grammar school, Hartmann contends, I could give her the self-confidence necessary to keep her going in the face of adversity. I found Hartmann’s formulation a bit more suited to my child than Hallowell’s “Ferrari brain,” which seems more appropriate for the classic “acts as if driven by a motor” ADHD boy.
Before I laid this fable on my child, though, I wanted to unpack it a bit. After all, for every Edison or Franklin who got kicked out of school for being a pain in the ass and went on to achieve greatness, there were probably thousands of otherwise bright people who ended up drunken ne’er-do-wells. And if we couldn’t yet be sure that ADHD did come with benefits like creativity and fearlessness, wouldn’t comparing my child to Edison be a risky falsehood, setting her up with expectations of greatness that might never be realized?
I put the question to Hartmann. He agreed that not all hunters turn out to be geniuses. “And if Edison and Franklin had been poor or African-American, their outcomes would have been very different,” he said. Still, he maintained that although firm scientific proof for the Edison/hunter gene story hadn’t yet been found, it was still worth telling my kid.
“It is absolutely irrefutable that one of the major variables that predicts adult success is the level of self-esteem held by that person as a child,” he asserted. “And I believe that these exceptional stories, the Franklins and Edisons, are useful metaphors for explaining to our children their differences, even if those children are never going to be Franklins or Einsteins, if it enhances their self-esteem, even if it’s not scientifically justifiable.”
Fair enough. We also tell them that their finger paintings are exquisite. So I left out the hunter bit, but I told Aurora all about the Franklins and Einsteins and how they had a hard time in school, and how they went on to become great people (it would have been nice to have some women in the mix, but oh well). She seemed pretty interested, and what could it hurt? It did seem a useful way to underscore the fact that even if ADHD weren’t a “gift,” it didn’t make you stupid.
As for the science, though, the jury is still out. Some theories about why mental and cognitive disorders (from schizophrenia to ADHD) persist in the human genome do speculate that they may once have been adaptive traits. Joel Nigg described a possible scenario that would encompass both the idea of ADHD as beneficial and ADHD as harmful, drawing a comparison to other genetic disorders like sickle-cell disease. If you have one sickle-cell gene—if you’re a carrier—you get resistance to malaria along with it, an adaptive trait. If you have two genes, though, you are sick: maladaptive. It’s possible that some genetically linked cognitive disorders work in a similar fashion. Some researchers have even suggested that the recent rise in autism diagnoses could be due to an increase in people with mild autism-like traits—e.g., two brilliant, nerdy computer programmers—meeting and having children.
In any case, the hunter theory may not hold up under the glare of Aurora’s developing awareness of her struggles. While a third-grader who still believes in Santa Claus might take comfort from such a story, somehow I don’t think I’ll get as much mileage out of it as she gets older, especially if she continues to flounder in school or at some point she crashes and burns, as happens to so many ADHD kids when they hit middle school.
If Hartmann is right, kids like Aurora would have been considered normal in the Pleistocene epoch. But the question remains: Where do these children belong in the modern world? If we can’t—or shouldn’t—“fix” them, what about fixing that world? Perhaps, rather than trying to cure them, we should be placing them in environments that allow them better access to their gifts.
That’s precisely what many neurodiversity radicals are arguing for. The founder of aspergia.com, a somewhat mysterious figure known only as “Edan,” published an essay on the site called “The Aspergian Mythos and Ethos.” The essay imagines and describes a lost civilization of Aspergia, whose citizens were distinguished by their solitary, passionate devotion to the cultivation of their Aspie-style special interests (called “gifts”). Other autistic pride advocates would take this sort of mythos creation one step further. On aspiesforfreedom.com, there is a discussion thread devoted to founding a literal Aspergia, an all-autistic island community that would serve as “a place to escape from NT society for a while or permanently.”
But while that island oasis remains in the drawing-board stage, desperate parents have founded what, for now, best approximates Aspergia and its ADHD equivalent: special schools intended to celebrate and work with, rather than quash, special-needs kids’ cognitive quirks, and along the way to give them a sense of belonging to a community of others like them.
The Hunter School, in Rumney, New Hampshire, was co-founded by Thom Hartmann for ADHD kids. The kindergarten-to-eighth-grade curriculum is based on the principles outlined in his book: that given the right educational environment, kids with ADHD can feel normal and even excel. According to Nicole Bushaw, the Hunter School’s lead teacher, the school’s student-teacher ratio of about five to one allows for learning plans tailored to the needs of kids with ADHD. The environment is multisensory, with lots of hands-on instruction and bouncy exercise balls for fidgety kids to sit on. There is an emphasis on structure but also an effort to find unconventional modes of instruction to get through to hard-to-teach kids. “If we’re doing spelling, instead of having the kids sit inside and write the words three times each, we might let them go outside and yell the letters,” Bushaw said. “They’re hearing it, speaking it, and also getting that excess energy out.”
I asked Bushaw if she thought ADHD was a disability. She said she didn’t consider it one, and that in her experience, kids with ADHD had consistent strengths. “They are very creative, because they’re already thinking outside that box. They’ll think of things before I think of them. When you can get them into something that they’re really passionate about, they’ll really make it grow, and they flourish in that area.”
At the Open School for Autism, a new school for autistic children set to open soon in upstate New York, the ideals of self-advocacy shape the curriculum. Its co-founder, Valerie Paradiz, found help in her struggle to understand her Aspie son at Autreat, a yearly “by-us-for-us” conference organized by Autism Network International, the original autism self-advocacy group. According to its website, the conference focuses on “positive living with autism, NOT on causes, cures, or ways to make us more normal”; participants wear color-coded badges indicating whether or not they are open to social interaction.
“The basic educational philosophy at the Open School is that autism is a way of life,” Paradiz said. “To begin with, we have a smaller class size, a school environment that’s not overstimulating, with lots of natural light and no fluorescent lights. We have a very structured setting, so that kids know what the day is like, and things are visually posted and clear. We have a sensory curriculum, where you’re actually learning about your own differences; it’s part of the self-advocacy curriculum I’ve developed. And there’s actually discussion about stimming, eye contact, and behaviors where you kind of make a choice as a self-advocate.”
The program encourages discussion of such behaviors—behaviors that often make the neurotypical world uncomfortable—to help students determine when they are acceptable. (This can vary according to the individual autistic person’s goals and comfort level.) The students also do research projects on autistic culture and history, Paradiz says, which gives them a sense of self-worth.
Paradiz claims that mainstreaming is furthered by a period of separatism and insulation from the NT world’s condemning gaze. “When you bring kids on the spectrum together for the first time, if they have never had meaningful, authentic friendships before, they are very likely to have them with fellow Aspies,” she said. “And that experience is so life-altering that they begin to actually grow together and move beyond those relationships.”
But neither Paradiz nor Bushaw advocates just leaving these kids’ deficits alone—and it is here they part company with the Aspergia-type radicals. Unlike those who would want to break away from mainstream culture, these schools work to give students the skills to survive in the NT world. Despite the bad press that ABA-style programs have received in some quarters, Paradiz said she is not opposed to them—her son benefited from one as a young child—if they are administered with kindness and respect for the individual. A cornerstone of the Hunter program—and probably the element that allows it to take on kids with extreme behavioral issues, something most private schools are not equipped to do—is the structured behavior plan that all students must follow.
“They each have eighteen things they work on every half hour, like gaining attention appropriately or staying in their assigned area,” Bushaw said. “We put in a point if they’ve made it, or leave it blank if they have not met the goal.” Points are added up for rewards, such as shopping in the student store or going on outings. As a system grounded in behaviorism, this program would appear to have more in common with ABA than with hunting mastodons on the frozen tundra.
I think I can safely speak for nearly all parents of special-needs children when I say that I applaud any effort to place such children in accepting environments. But once again—as with Dawson’s critique of ABA—I have to wonder where low-functioning kids fit in. As a movement, neurodiversity’s parallels with other identity politics tend to break down in the face of severe impairment—sometimes in ways that can seem distressingly callous.
In a seminal 1993 essay titled “Don’t Mourn for Us,” Jim Sinclair, a founder of Autism Network International and Autreat, castigates parents of autistics who experience their children’s autism as tragedy. “When parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child,” he writes.
Unsurprisingly, while some parents of autistic children have embraced Sinclair’s view, many react to this manifesto—and to other activists’ equating efforts to cure autism with previous generations’ efforts to cure homosexuality or even left-handedness—with outrage. It makes sense to say that for a gay child to flourish, all that really needs to happen is societal change. But with cognitive disabilities, even strengths-based programs such as the Hunter School and the Open School necessarily contain elements aimed at changing the child. And while autistic adults may know what it’s like to be autistic, they may not have had the experience of providing round-the-clock care to a severely autistic child, which is exhausting and stressful in the extreme.
My friend Martin is deeply sympathetic to the notion that society should make a place for autistics. He and his wife have already made the decision to transfer Sam to a school that is more accepting of his differences, and they encourage his special interests by incorporating them into family outings and vacations. They hope that by the time he grows up, more colleges and businesses will be providing services and support for Aspies, and that society on the whole will be more tolerant of them. But as accepting as he is of his son’s difference, Martin believes that Sam will need a good deal of intervention in order to survive out in the world.
“Asperger’s has strengths that come along with it, like a good memory and a passion for certain topics,” Martin said. “But the tradeoff is a lot of qualities that would make anyone’s life difficult, like knowing whether someone is trustworthy or not. Most kids, by the second grade, already have a kind of radar for creepy people, being able to tell if someone is kidding, if someone wants something from you. These kids just don’t have that, and it makes them really vulnerable. It also makes kids very lonely. Just because they don’t socialize well, and in some ways don’t feel the need to socialize as much as other kids do, that doesn’t mean that many of them don’t end up lonely as adults.”
Talking with Martin, it didn’t appear to me that he was mourning the loss of a “normal” child that never existed. He was mourning, in advance, the hardship that he foresees in his actual child’s future. I recognized this, because I do it myself.
While parents with cognitively disabled kids may view the neurodiversity movement with trepidation, it continues to develop, expanding to include disabilities other than autism, drawing rhetoric from the discourse of disability rights, queer theory, and deaf culture. It’s possible that by the time Aurora and Sam are adults, they will be encouraged to consider themselves “cognitive minorities,” with a politics and culture all their own.
Jonathan Mooney is working to create a political umbrella that would cover Sam, Aurora, and other neurological oddballs, and to develop a kind of politics of eccentricity around it. After flunking out of sixth grade because of severe dyslexia and attention problems (he did not learn to read until he was twelve), Mooney went on to become an Ivy League graduate and a national finalist for a Rhodes Scholarship. When he was twenty-three, he co-wrote Learning Outside the Lines, a book on alternative study skills for LD kids. He then co-founded Project Eye to Eye, a mentoring program that pairs LD kids with LD adults, and wrote another book, The Short Bus, which chronicles his road trip across the country in a special-ed bus meeting other “abnormal” people, including a young woman with Down syndrome, a transgender Maine lobsterman, and a severely hyperactive performance artist.
Contrary to the uplifting jacket copy (“Mooney’s search to learn from others once labeled abnormal who have learned to live in beautifully original ways”), I found the book engaging but not especially cheering. The performance artist’s ADHD has rendered him more or less a failure, despite his brilliantly original comic sensibility. The lobsterman is being harassed by developers intent on turning his town into a resort community. The girl with Down syndrome gets fired from her part-time job at McDonald’s. But I was intrigued by Mooney’s effort to unite disparate misfits with the battle cry “Normal people suck.” Along with autism rights activists, he takes society to task for pathologizing what may be normal human variation, expanding the umbrella to claim kinship with an eight-year-old deaf-blind girl and a teenager with cerebral palsy. The book’s apotheosis comes when his eccentric uncle reveals to him that he has suffered from mental illness and then advises him, “Normal is so much bigger than we think.”
As appreciative as I was of embracing difference and flipping the bird to the (neurotypical) Man, I wondered if a sense of rebellious group membership with everyone who either wouldn’t or couldn’t conform—from depressive uncles to the deaf-blind—would help Aurora find her way when the childish afterglow of morale-boosting Edison stories wears off. Other than telling normal people that they suck, what is this movement going to do, and how is it going to do it?
“I think in the first place, normal people suck,” Mooney said genially when I put the question to him in a phone interview. The phrase is more tongue-in-cheek than hostile, but with it, Mooney seeks to solidify an oppositional group identity in much the same way any minority does when it pokes fun at the oppressor. “The first thing to understand is that there is a force we are all struggling against, the imperative to be normal,” he said. “This connects me as a dyslexic to somebody with Asperger’s, ADD, autism.”
Mooney went on to tell me that the goals of the movement he envisions are twofold: that every human being has the right to “build an asset-based paradigm” for himself (a self-concept based in an individual’s strengths rather than his societally defined deficits) and that rather than “fixing people,” we should be “fixing systems” of education and employment. “It’s about a core change away from an individual remediation model to a systemic change, a lowering barriers model,” he said.
As much as I believe in self-determination—the right to be different—for adults with cognitive disabilities, it may be unrealistic to ask parents of severely impaired kids to refrain from trying to “fix” them. But lowering barriers? There’s a battle cry that parents and self-advocates should be able to all get behind. If you can just keep a kid going, helping her over the rough patches, giving extra help where it’s needed, and seizing on anything that looks like a strength or a competence—okay, a gift—that kid might surprise you one day. After all, my father, the math failure, ended up working with matrix theory for a living. Michelle Dawson does high-level scientific research. Jonathan Mooney wrote two books and tours the nation giving talks. Imagine what they might have done with an “asset-based paradigm.”
Just when I think I’ve got my Special Child figured out, she surprises me. Not long ago, an artist friend was visiting us, and my kids wanted an art lesson. Yu Ping gave them an assignment to draw a picture of our family having fun in the back yard. I expected her to exclaim over the work of my younger daughter, who has excellent fine motor skills, no disabilities, and draws very well. But to my intense delight, she singled out Aurora’s picture, saying it showed signs of an unusual sensibility, possibly worthy of cultivating. “Her execution is immature and makes it look like she’s the younger one,” Yu Ping said. “But her way of visualizing is very original. You should have her do more art and see what develops.”
As much as reporting on the neurodiversity movement sometimes made me want to punch a wall, I did end up having my consciousness raised by talking to people like Michelle Dawson and Jonathan Mooney. I’m not giving up on “fixing,” but I did start looking for ways of lowering barriers for Aurora, and decided that handwriting was an easily removable obstacle to her learning. The struggle to form letters on a page threatened to derail the development of her ideas, vocabulary, and syntax. So I got permission to take dictation on writing-heavy homework assignments, and to get her started on keyboarding. The result? She writes more complex sentences, it takes a quarter of the time, and rather than viewing me as a homework enforcer, she sees me as an ally and a helpmeet.
When my daughter was six years old and couldn’t spell her own first name or count five balloons on a math worksheet, my friends said soothing things.
“It will come,” they said. “She’ll be fine. She’s clearly so bright.”
A year later, when Aurora was desperately struggling in school and newly diagnosed with attention-deficit hyperactivity disorder (moderate-to-severe), dyslexia (mild-to-moderate), fine motor delays (severe), and auditory processing issues (indeterminate), some helpful types were still determined to think positive.
“You just have to find her gift,” they said. “That will build her self-esteem. Then she’ll be fine.”
“Yes, of course, all children have gifts,” I repeated dully, choking back the retort that no matter how gifted a person is at music or macramé, she has to know how to read and do long division in order to be “fine.”
Only to my closest friends did I voice my darkest, most secret thought: that in no area did my adored child show the least sign of any gift, talent, or even average degree of competence. Hopelessly uncoordinated, with “soft neurological signs,” she failed spectacularly at sports. She couldn’t read. Fine motor problems ruled out art as a path to self-esteem. She loved to listen to music, but coordination and attention problems got in the way of learning to make it. She couldn’t clap a simple 4/4 rhythm, and her piano teacher fired her for being hyper and unfocused. She couldn’t do puzzles, build with blocks, color inside the lines, or play a board game. She was being bullied because she couldn’t read other kids’ nonverbal social cues. And getting her ready for school in the morning was a tear-stained, operatic drama.
But we weren’t yet ready to embrace a medical diagnosis (ADHD was the invention of drug-pushing Big Pharma, right?). So we put her in a mellow hippie school where nobody gave her demerits when she couldn’t sit still, and waited for the gifts to emerge. We tried countless alternative remedies and maintained our nonconformist skepticism about the status of ADHD as a legitimate disability. But I think the real reason behind our skepticism, other than native cussedness, was that to call our child disabled would be to condemn her to a lifetime of hardship. If her situation were a kind of temporary disease state, correctable if she consumed enough fish oil, or jumped up and down on a trampoline while reciting the alphabet, or ate not one molecule of artificial color or flavor, she might get better. She might become merely quirky or exuberant, not impaired.
But before long, it became pretty clear that the problem was not going to simply fade away. Toward the end of her first-grade year, we were working on math homework together at the dining room table. The problem was 0 + 1. Aurora couldn’t produce the answer on her own, so I got out a Lego.
“Now, sweetie,” I said. “How many Legos are there on the table right now?”
“Zero,” she said.
“Okay, good.” I put the Lego on the table in front of her. “Now how many Legos are on the table?”
“Zero!” she crowed happily, looking at a spot on the wall somewhere above my head.
There was a time when I might have screamed at her to snap out of it, to pay attention and get with the program—not out of anger, but out of fear. Or at least the anger that comes from fear. But suddenly, I was struck by the realization that she really, truly couldn’t help it. She could not focus well enough even to understand what she was being asked to do. And even if she one day developed a knack for Model U.N. or playing the accordion, this child was going to need help—serious help, years of help, thousands of dollars’ worth of help—to learn the basic math and reading skills that would allow her to function as an adult. Sitting there at the dining room table with a seven-year-old who, despite documented high intelligence, could not successfully count one Lego, I accepted the label: My kid had a disability.
I got down to business, pursuing treatments and therapies aimed at mitigating that disability. I told her teachers she was ADHD and had dyslexia and possibly other learning disabilities (as if they were surprised). And when she started asking awkward questions like “Mom, am I dumb?” I answered honestly: “No, you have a disability that makes some things harder for you to do. Just like how having cerebral palsy made it harder for your friend Grace to walk.”
It was the label that got Aurora what she needed in order to learn to read, count Legos, sit still long enough to draw a picture, and refrain from spitting on her desk and running up to horrified children at recess to give them great big hugs. And it was the label—not the vague promise of unnamed “gifts”—that allowed her to salvage something of her self-esteem when she was struggling to keep up with the lowest reading group, the lowest math group, and unable to kick a ball or make sense of her classmates’ social interactions. I still expected her to try her best, but when she simply couldn’t hack it, she believed me when I told her it was because she was disabled, not stupid, lazy, naughty, or weird.
By this past fall, the start of third grade—after nearly two years of living with the label—she was doing somewhat better. During the course of second grade, an intensive program for dyslexics got her reading. She was making friends, participating in class, getting excited about Mesopotamia and optical illusions. But there were still major issues with spelling, math, and handwriting. Her confidence was better, but school and homework still created a good deal of anxiety. I geared up for another round of neuropsych testing, hired a math tutor, met with teachers, drilled with flash cards. Helping Aurora was kind of like having a second job, but we were making progress and I felt, if not wholly optimistic, at least not entirely despairing. The idea of “gifts” had been pushed out of my mind, but at least now she could spell her name—first, last, and (sometimes) middle.
Then I happened to speak to an old friend, Martin, whose son Sam had recently been diagnosed with Asperger’s syndrome, a disorder on the milder end of the autism “spectrum.” (Names have been changed.) Martin’s experience was similar to mine: wondering what was wrong through the preschool years; inconclusive tests and failed hypotheses; and then an official diagnosis that gave rise to a plan of action. Martin started Sam on an intensive program of behavioral therapy called Applied Behavior Analysis, or ABA, aimed at improving Sam’s social skills and—Martin hoped—helping him overcome the cognitive deficits that had already become apparent. Sam was technically the best reader in his first-grade class—hyperlexia is a common Asperger’s trait—but he was unable to comprehend the plot of a simple story or Bugs Bunny cartoon. ABA is a widely used approach, based on the behaviorist school of psychology, that many parents of autistics credit with bringing about great improvements in their children’s ability to function more normally. ABA therapists break down desired “behaviors” into small steps and teach them by means of prompting and positive reinforcement. A typical program requires twenty to forty hours a week of therapy; Sam will do eighty hours a month for at least two years.
“But some people think you shouldn’t do this sort of thing,” Martin said.
“Really?” I was astonished. “Who?”
“There’s a movement in autism circles that would say we’re just trying to change him for our own selfish reasons,” he said. “That you shouldn’t treat autism, that it’s an identity, not a disorder, and you should just accept it and love the kid for who he is.”
I went online and soon found that he was right. And it isn’t just autism: An identity politics had also been growing up around dyslexia, ADHD, and other developmental and learning disabilities, springboarding off the disability rights and deaf culture movements. In the same way that many deaf community activists reject the notion of deafness as a deficit and speak against cochlear implants on the grounds that they enact “cultural genocide” on deaf culture, the “neurodiversity” movement denies that cognitive differences are disabilities, revisioning them as part of the grand continuum of human neurological variation, with strengths as well as deficits (in other words, gifts). In its more radical manifestation, the movement is steeped in the rhetoric of identity politics, staking out territories of “autistic culture” and “LD pride,” poking fun at “neurotypicals” or “NTs” (a term coined in the autism rights community to describe non-autistics). These new neurodiversity radicals make the bold claim that rather than trying to “fix” them, society should simply accept (and accommodate) them.
It was a shock to discover a subculture intent not on denying my child’s impairment, as I had initially done, but on celebrating it, redefining it as a benign “difference,” analogous to being an ethnic or sexual minority. It was a shock because my child (and Martin’s child) seemed so clearly impaired. It was a shock because not so long ago, people who couldn’t learn the usual things in the usual ways were subjected not to therapy and medication but to humiliation and abuse.
My father, who was born in 1930, had a very similar cognitive profile to Aurora’s. He had terrible trouble in school and was always on the verge of being held back. Like Aurora, he didn’t learn to tie his shoes until he was seven—and in the 1930s, they did not have Velcro. His teachers knew he was bright, so they called him lazy. His report cards came home stamped “Shows little effort” so frequently that his parents nicknamed him “Little Effort.” He dropped out of high school, joined the Army, and didn’t graduate from college until he was forty. (He then went on to become an aeronautical engineer and worked on the first lunar landing and Space Shuttle projects, as I am fond of telling my currently math-challenged daughter.) Compared to “Little Effort,” calling Aurora disabled seemed like a step toward a more humane, compassionate understanding of cognitive difference.
But now, after just a couple of decades of the medical model of learning problems, a major backlash seemed to have developed. That backlash demonizes “NT” parents and scientists as destroyers of identity and self-esteem. Mainstream autism advocates and parents trying to help their kids are labeled with their own disparaging moniker: curebies.
I wondered if one day Aurora would vilify me as a “curebie” who ruined her childhood with treatments aimed at altering her very being, and who saddled her with a soul-destroying sense of her own defectiveness. At the very least, it seemed that the neurodiversity movement could make excellent fodder for adolescent rebellion. But I had to ask myself: Did they have a point? I had practically killed myself for three years trying to help my daughter by fixing her. Was I going about this all wrong?
The special-needs parenting section at the bookstore is full of titles like The Gift of Dyslexia, The Gift of ADHD, and Autism and the God Connection—books that argue that these conditions are not pathologies, but neurological variations that produce people who are more creative, more intuitive, more visual, more able to “think outside the box,” or more spiritual. Many argue that conventional education and the medical management of these conditions can be more devastating than the conditions themselves, blunting the gifts and producing a self-fulfilling prophecy of misbehavior and failure.
They often trot out famous geniuses supposedly afflicted with one or more of these conditions: Einstein is claimed by autism, dyslexia, and ADHD. Other (speculative) favorites include Thomas Edison (ADHD), Benjamin Franklin (ADHD), Thomas Jefferson (Asperger’s), and Steven Spielberg (Asperger’s). Some New Agers claim that ADHD and autistic kids have simply evolved to a higher spiritual plane and possess psychic powers; UFO enthusiasts speculate that they are alien hybrids. To read some of these books, you would think the inability to learn to read, add, and subtract were the greatest thing that ever happened to my kid.
Dr. Edward Hallowell was one of the originators of the notion that ADHD may not be entirely a bad thing. A psychiatrist in Sudbury, Massachusetts, and New York City specializing in the condition, he had a major role in introducing it to the popular consciousness, coauthoring several books on it (including Driven to Distraction, 1994) and founding the Hallowell Center, a chain of clinics that use a “strengths-based” approach to diagnosing and treating ADHD and LD.
While Hallowell doesn’t deny that ADHD can cause a person some pretty major problems—he makes his living treating the condition as a disorder—he also has one foot firmly in the “gifts” camp. His website states, “We see ADD, dyslexia, and other learning issues as potential gifts that can be difficult to unwrap.” I decided it was time to open my mind to this concept. After all, the idea of ADHD/LD as entirely a disability had helped Aurora, but we weren’t exactly home free. So I called up Hallowell to see if I could get some clarification on what her gifts might be, and how to unwrap them.
When he tells a young patient he has ADHD, Hallowell told me, he doesn’t present it as a sickness or a defect. “I tell them I have great news, that they have a Ferrari brain,” he said. “I tell them that they are going to win a lot of races, but that the one problem is that they have Chevrolet brakes. And I tell them that I am a brake specialist. They leave my office saying, ‘I’ve got a gift, this incredible brain.’ ”
Hallowell acknowledged that the Ferrari metaphor may not stand up in the court of scientific evidence. But he assured me that it’s not just empty, self esteem-boosting rhetoric. “I don’t bullshit kids,” he said. “I believe it with all my heart and soul. A lot of experts in the field quibble that there is no data to prove that ADHD people are more creative. I say, fine, go count your beans. That’s not my job. The point is not can we prove this, but that we will give these people much better treatment if we approach them this way. I have been treating ADD for twenty-five years, and my clinical experience is worth something, and I happen to believe that people with ADD are more creative, intuitive and enthusiastic.”
But is it a disability or a “difference”? Hallowell himself has both ADHD and dyslexia, and pointed out that while he has faced hardship because of these conditions and remains a slow reader, he makes his living writing books. “I don’t like this either/or way of looking at it,” he said. “I say it’s a way of being that has advantages and disadvantages. The prisons are full of people with untreated ADD. Obviously if it’s not treated right it’s a curse. But if it’s handled right you end up like David Neeleman, the CEO of JetBlue airlines.” Neeleman likes to say that if he could take a “magic pill” to get rid of his ADHD, he wouldn’t do it: He credits the disorder with giving him the originality it took to invent the paperless airplane ticket.
A skeptical bean counter might say that there’s little reason to believe that Neeleman’s ADHD and his creativity are necessarily linked. Joel Nigg, a professor of psychology at Michigan State University and the author of What Causes ADHD? Understanding What Goes Wrong and Why, is not dismissive of the notion that those diagnosed with ADHD and autism might have gifts, but he said that most studies have failed to find any.
“The most typical thing people want to say related to ADHD is creativity,” Nigg said. “There is very little literature on that, and there really isn’t any good evidence of it. There’s lots of speculation. A study came out this year that found a little more creativity in the ADHD group, but the kids couldn’t apply it. They could recognize more solutions but didn’t have the mental control to apply those solutions.”
Indeed, where evidence of a link between creativity and ADHD symptoms has been found, that relationship has been complex. A 2006 study by researchers at New Zealand’s University of Canterbury found that forty percent of a sample of highly creative children displayed mild ADHD symptoms—a much higher percentage than would be found in the general population—but none met the full criteria for ADHD. According to questionnaires filled out by their parents and teachers, none was impaired by their symptoms. (Significant impairment is one of the official criteria for diagnosing ADHD.) It seems quite possible that elevated inattentiveness may be a characteristic of some restlessly creative minds but that ADHD as a pathology is something else altogether.
Similar research aims to pin down the cognitive strengths of autistics. In 2007, Laurent Mottron, a professor of psychiatry at the University of Montreal, led a group of American and Canadian researchers who gave autistic and normal children two of the most common IQ tests: the Wechsler scales, which is heavily language-based, and Raven’s Progressive Matrices, which asks subjects to complete complex visual patterns in a wholly nonverbal format. The non-autistic kids had similar scores on both tests. But while no autistic child scored in the “high intelligence” range of Wechsler, one-third did on Raven’s. Similarly, one-third of autistics scored in the mentally retarded range on Wechsler, but only one in twenty did on Raven’s. The researchers were able to reproduce the results with a group of autistic and normal adults. The implications are startling: At least some autistic people previously considered intellectually deficient may, in fact, be in the normal or even gifted range when it comes to abilities such as memory and abstract reasoning. One autistic subject who was deemed mentally retarded by the Wechsler scored in the 94 th percentile on Raven’s.
Mottron has credited Michelle Dawson, an autistic colleague with a high school education, with bringing about a paradigm shift in his research. A former postal worker, Dawson began working with Mottron as a research partner after the two met on a film project about autism; he was astonished to find that she could present cogent (and scathing) critiques of his research methodology and conclusions.
Dawson has become a controversial figure in mainstream autism circles because of her anti-ABA activism. For her, evidence of autistics’ cognitive strengths fuels a fierce animus against any therapy aimed at making them less autistic. She has challenged ABA on ethical as well as scientific grounds. In 2006, she submitted testimony to the Supreme Court of Canada in a lawsuit brought by parents intent on forcing the government to pay for their children’s therapy. Dawson argued that since children cannot consent to behavioral therapy, a rigorous ethical review of ABA’s goals and practices—with input from autistics as well as scientists, ethicists, and legal scholars—must be undertaken before the Canadian government can endorse it. When it ruled against the families, the court cited Dawson’s testimony.
To be sure, ABA does have something of a checkered past. Its originator, clinical psychologist Ole Ivar Lovaas, originally used “aversives”—shouting, striking, or electric shock—in tandem with positive reinforcement to produce desired behavior in autistic children. Aversives have been largely abandoned, but later researchers have found that Lovaas’ landmark 1987 study on ABA, which claimed that a significant proportion of his autistic subjects had become “indistinguishable” from their non-autistic peers, overstated the technique’s efficacy. (Nonetheless, a 2005 study found ABA more effective than other approaches for improving autistic children’s cognitive, language, and social skills.)
Anti-ABA activists like Dawson contend that a successful ABA graduate has simply been taught to suppress his natural modes of learning about and interacting with the world—behaviors such as self-stimulation, or “stimming” (rocking, flapping, etc.), and obsessive interest in arcane topics, seemingly pointless actions to neurotypicals. “While this lacks a bit of nuance, Raven can be said to measure the ability of a person to learn,” Dawson told me in an e-mail. “Clearly, as evidenced by our study and many others, autistics can learn well, and sometimes exceptionally, in ways not only distant from the practices in A.B.A. programs but actively discouraged or extinguished [in them].”
While Dawson’s ability to master scientific discourse would seem to be further proof of her claims about autistic intelligence, her intellectual achievements have also caused parents of autistics to question her autistic status—and her right to make pronouncements about their severely impaired children. These parents argue that acceptance and accommodation may make sense for high-functioning autistics with largely social problems, but not for kids who can’t use the toilet, who injure themselves or others, or who may not be able to live independently as adults.
Dawson’s supporters retort that it can be difficult to determine a person’s degree of autistic impairment by reading his or her written communications. Three (unnamed) site administrators at autistics.org, a hub of radical autistic self-advocacy, collectively posted a response to Dawson’s critics in which they asserted that (despite their ability to write coherent prose and maintain a website) all three have been called things like “low-functioning,” “mentally retarded,” or “unsalveagable” by professionals. All have communicative speech problems, none is fully toilet-trained, and all are visibly autistic. “We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss, and tic,” they wrote. “Two of us don’t even believe in the distinction between high- and low-functioning, and neither does Michelle Dawson.”
Even if you accept that low-functioning autistics may have special cognitive powers, or ADDers more creativity, it’s reasonable to argue that they may still need a lot of help—perhaps even medication or behaviorism—to be able to use their skills and make their way in the world. Parents charge that while the neurodiversity movement is ready with criticisms of available therapies, it offers little in the way of practical solutions to help them and their children cope with life.
There remains the compelling insight that even the most impaired-seeming person may have abilities, perceptions, and feelings “normal” people can scarcely imagine. Indeed, through the use of computer technology, nonverbal, low-functioning autistics who might have been institutionalized in an earlier era have found the means to convey their awareness and intelligence to the world. One, Amanda Baggs, became an Internet sensation last year after posting a short film on YouTube titled “In My Language,” which depicts her routine stimming behavior, accompanied by her own written commentary voiced by a computer. Although Baggs cannot speak, her typed communication reveals her to be an aware, intelligent, and witty person. She later guest-blogged for Anderson Cooper.
For Baggs and others like her, it’s all about the environment: When she has access to a keyboard, she’s viewed as intelligent. Without one, she appears to be mentally retarded. She does not make eye contact with others but has said that when she is “talking” (via computer) to her autistic friends, she feels “totally normal.”
According to some ADHD iconoclasts, a different social or educational environment could provide a similar sense of normality for ADDers. In addition, in some environments, a behavior that appears to be a deficit (extreme impulsiveness, for instance) could be an asset. In his book The Edison Gene: ADHD and the Gift of the Hunter Child (2003), Thom Hartmann, the liberal talk show host and author, argues that ADHD represents the genetic traces of hunter-gatherer civilization, left over in the human genome after the transition to agricultural civilization. He came up with the idea, he writes, as a metaphor for understanding the way ADHD minds work: Unlike the steady, methodical, team-playing “farmers” (neurotypicals), “hunters” are independent, visual, tireless, impulsive and risk-taking, and constantly “scanning” their surroundings for prey and enemies.
With the discovery of a specific gene variation linked to a large proportion of ADHD cases, though, the metaphor took on scientific substance: Hartmann contends that there is now genetic evidence that ADHD could be an adaptive (evolutionarily good) rather than a maladaptive trait. He cites a 2002 study by researchers at the University of California-Irvine that found that the allele, which makes brain receptors for dopamine, arose as a spontaneous mutation between 10,000 and 40,000 years ago. This mutation may have provided ancient hunter-gatherers with an evolutionary advantage that subjected it to positive selection—an advantage that may have persisted, in certain circumstances, even to the present day, thus accounting for its continued frequency. (One recent study found that the prevalence of ADHD among eight- to fifteen-year-olds was 8.7 percent.)
An appealing idea—except for one small problem: When I read the book, Hartmann’s list of “hunter” traits seemed to have little to do with the reality of my ADHD child. More than one mainstream ADHD expert has joked that he would not want to go hunting with any of his patients, and I was inclined to agree with them. Aurora’s inattentiveness and hyperactivity has caused me minor physical injury on more than one occasion (and that’s without putting a spear in her hands). She might be constantly scanning her environment, but she also has poor working memory and terrible motor skills (common in people with ADHD), traits that would make her easy prey for a saber-toothed tiger. And while, as Hartmann notes, some people with ADHD have the ability to “hyperfocus” in certain highly stimulating situations, such as a mastodon hunt, my daughter does not appear to possess this potentially useful trait.
On the other hand, I could tell from reading the book that Hartmann was a ferociously intelligent Renaissance man (he’s also written books on global warming, Thomas Jefferson, and the war on the middle class), and I liked the idea of a smart, iconoclastic layman challenging the conventional scientific wisdom on ADHD. I also appreciated his humane attitude toward children with “issues,” born of much personal experience: He has a son with ADHD, and in fact has it himself and failed spectacularly in a conventional school environment. The book’s practical recommendations are sensible enough—among them, little or no television, plenty of play and exercise, essential fatty acids, a school environment tolerant of and tailored to your child’s special needs.
The only problem was that I’d already observed most of them since Aurora was a baby, to little avail. One recommendation from Hartmann I hadn’t yet tried, though, was to provide her with a positive-spin narrative of her condition.
“Instead of thinking of an Edison gene child as having a genetic mental problem or ‘disorder,’ ” he writes, “tell her—and yourself—that she is the descendant of the explorers who moved across the world discovering and populating new lands and of people like Thomas Edison, who invented all sorts of ways to make life better, healthier, or easier. … Point out the positives of his genetic trait: energy, enthusiasm, creativity, the ability to think on your feet, fearlessness.” By pointing out my child’s kinship with geniuses like Edison and Ben Franklin, both of whom were expelled from grammar school, Hartmann contends, I could give her the self-confidence necessary to keep her going in the face of adversity. I found Hartmann’s formulation a bit more suited to my child than Hallowell’s “Ferrari brain,” which seems more appropriate for the classic “acts as if driven by a motor” ADHD boy.
Before I laid this fable on my child, though, I wanted to unpack it a bit. After all, for every Edison or Franklin who got kicked out of school for being a pain in the ass and went on to achieve greatness, there were probably thousands of otherwise bright people who ended up drunken ne’er-do-wells. And if we couldn’t yet be sure that ADHD did come with benefits like creativity and fearlessness, wouldn’t comparing my child to Edison be a risky falsehood, setting her up with expectations of greatness that might never be realized?
I put the question to Hartmann. He agreed that not all hunters turn out to be geniuses. “And if Edison and Franklin had been poor or African-American, their outcomes would have been very different,” he said. Still, he maintained that although firm scientific proof for the Edison/hunter gene story hadn’t yet been found, it was still worth telling my kid.
“It is absolutely irrefutable that one of the major variables that predicts adult success is the level of self-esteem held by that person as a child,” he asserted. “And I believe that these exceptional stories, the Franklins and Edisons, are useful metaphors for explaining to our children their differences, even if those children are never going to be Franklins or Einsteins, if it enhances their self-esteem, even if it’s not scientifically justifiable.”
Fair enough. We also tell them that their finger paintings are exquisite. So I left out the hunter bit, but I told Aurora all about the Franklins and Einsteins and how they had a hard time in school, and how they went on to become great people (it would have been nice to have some women in the mix, but oh well). She seemed pretty interested, and what could it hurt? It did seem a useful way to underscore the fact that even if ADHD weren’t a “gift,” it didn’t make you stupid.
As for the science, though, the jury is still out. Some theories about why mental and cognitive disorders (from schizophrenia to ADHD) persist in the human genome do speculate that they may once have been adaptive traits. Joel Nigg described a possible scenario that would encompass both the idea of ADHD as beneficial and ADHD as harmful, drawing a comparison to other genetic disorders like sickle-cell disease. If you have one sickle-cell gene—if you’re a carrier—you get resistance to malaria along with it, an adaptive trait. If you have two genes, though, you are sick: maladaptive. It’s possible that some genetically linked cognitive disorders work in a similar fashion. Some researchers have even suggested that the recent rise in autism diagnoses could be due to an increase in people with mild autism-like traits—e.g., two brilliant, nerdy computer programmers—meeting and having children.
In any case, the hunter theory may not hold up under the glare of Aurora’s developing awareness of her struggles. While a third-grader who still believes in Santa Claus might take comfort from such a story, somehow I don’t think I’ll get as much mileage out of it as she gets older, especially if she continues to flounder in school or at some point she crashes and burns, as happens to so many ADHD kids when they hit middle school.
If Hartmann is right, kids like Aurora would have been considered normal in the Pleistocene epoch. But the question remains: Where do these children belong in the modern world? If we can’t—or shouldn’t—“fix” them, what about fixing that world? Perhaps, rather than trying to cure them, we should be placing them in environments that allow them better access to their gifts.
That’s precisely what many neurodiversity radicals are arguing for. The founder of aspergia.com, a somewhat mysterious figure known only as “Edan,” published an essay on the site called “The Aspergian Mythos and Ethos.” The essay imagines and describes a lost civilization of Aspergia, whose citizens were distinguished by their solitary, passionate devotion to the cultivation of their Aspie-style special interests (called “gifts”). Other autistic pride advocates would take this sort of mythos creation one step further. On aspiesforfreedom.com, there is a discussion thread devoted to founding a literal Aspergia, an all-autistic island community that would serve as “a place to escape from NT society for a while or permanently.”
But while that island oasis remains in the drawing-board stage, desperate parents have founded what, for now, best approximates Aspergia and its ADHD equivalent: special schools intended to celebrate and work with, rather than quash, special-needs kids’ cognitive quirks, and along the way to give them a sense of belonging to a community of others like them.
The Hunter School, in Rumney, New Hampshire, was co-founded by Thom Hartmann for ADHD kids. The kindergarten-to-eighth-grade curriculum is based on the principles outlined in his book: that given the right educational environment, kids with ADHD can feel normal and even excel. According to Nicole Bushaw, the Hunter School’s lead teacher, the school’s student-teacher ratio of about five to one allows for learning plans tailored to the needs of kids with ADHD. The environment is multisensory, with lots of hands-on instruction and bouncy exercise balls for fidgety kids to sit on. There is an emphasis on structure but also an effort to find unconventional modes of instruction to get through to hard-to-teach kids. “If we’re doing spelling, instead of having the kids sit inside and write the words three times each, we might let them go outside and yell the letters,” Bushaw said. “They’re hearing it, speaking it, and also getting that excess energy out.”
I asked Bushaw if she thought ADHD was a disability. She said she didn’t consider it one, and that in her experience, kids with ADHD had consistent strengths. “They are very creative, because they’re already thinking outside that box. They’ll think of things before I think of them. When you can get them into something that they’re really passionate about, they’ll really make it grow, and they flourish in that area.”
At the Open School for Autism, a new school for autistic children set to open soon in upstate New York, the ideals of self-advocacy shape the curriculum. Its co-founder, Valerie Paradiz, found help in her struggle to understand her Aspie son at Autreat, a yearly “by-us-for-us” conference organized by Autism Network International, the original autism self-advocacy group. According to its website, the conference focuses on “positive living with autism, NOT on causes, cures, or ways to make us more normal”; participants wear color-coded badges indicating whether or not they are open to social interaction.
“The basic educational philosophy at the Open School is that autism is a way of life,” Paradiz said. “To begin with, we have a smaller class size, a school environment that’s not overstimulating, with lots of natural light and no fluorescent lights. We have a very structured setting, so that kids know what the day is like, and things are visually posted and clear. We have a sensory curriculum, where you’re actually learning about your own differences; it’s part of the self-advocacy curriculum I’ve developed. And there’s actually discussion about stimming, eye contact, and behaviors where you kind of make a choice as a self-advocate.”
The program encourages discussion of such behaviors—behaviors that often make the neurotypical world uncomfortable—to help students determine when they are acceptable. (This can vary according to the individual autistic person’s goals and comfort level.) The students also do research projects on autistic culture and history, Paradiz says, which gives them a sense of self-worth.
Paradiz claims that mainstreaming is furthered by a period of separatism and insulation from the NT world’s condemning gaze. “When you bring kids on the spectrum together for the first time, if they have never had meaningful, authentic friendships before, they are very likely to have them with fellow Aspies,” she said. “And that experience is so life-altering that they begin to actually grow together and move beyond those relationships.”
But neither Paradiz nor Bushaw advocates just leaving these kids’ deficits alone—and it is here they part company with the Aspergia-type radicals. Unlike those who would want to break away from mainstream culture, these schools work to give students the skills to survive in the NT world. Despite the bad press that ABA-style programs have received in some quarters, Paradiz said she is not opposed to them—her son benefited from one as a young child—if they are administered with kindness and respect for the individual. A cornerstone of the Hunter program—and probably the element that allows it to take on kids with extreme behavioral issues, something most private schools are not equipped to do—is the structured behavior plan that all students must follow.
“They each have eighteen things they work on every half hour, like gaining attention appropriately or staying in their assigned area,” Bushaw said. “We put in a point if they’ve made it, or leave it blank if they have not met the goal.” Points are added up for rewards, such as shopping in the student store or going on outings. As a system grounded in behaviorism, this program would appear to have more in common with ABA than with hunting mastodons on the frozen tundra.
I think I can safely speak for nearly all parents of special-needs children when I say that I applaud any effort to place such children in accepting environments. But once again—as with Dawson’s critique of ABA—I have to wonder where low-functioning kids fit in. As a movement, neurodiversity’s parallels with other identity politics tend to break down in the face of severe impairment—sometimes in ways that can seem distressingly callous.
In a seminal 1993 essay titled “Don’t Mourn for Us,” Jim Sinclair, a founder of Autism Network International and Autreat, castigates parents of autistics who experience their children’s autism as tragedy. “When parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child,” he writes.
Unsurprisingly, while some parents of autistic children have embraced Sinclair’s view, many react to this manifesto—and to other activists’ equating efforts to cure autism with previous generations’ efforts to cure homosexuality or even left-handedness—with outrage. It makes sense to say that for a gay child to flourish, all that really needs to happen is societal change. But with cognitive disabilities, even strengths-based programs such as the Hunter School and the Open School necessarily contain elements aimed at changing the child. And while autistic adults may know what it’s like to be autistic, they may not have had the experience of providing round-the-clock care to a severely autistic child, which is exhausting and stressful in the extreme.
My friend Martin is deeply sympathetic to the notion that society should make a place for autistics. He and his wife have already made the decision to transfer Sam to a school that is more accepting of his differences, and they encourage his special interests by incorporating them into family outings and vacations. They hope that by the time he grows up, more colleges and businesses will be providing services and support for Aspies, and that society on the whole will be more tolerant of them. But as accepting as he is of his son’s difference, Martin believes that Sam will need a good deal of intervention in order to survive out in the world.
“Asperger’s has strengths that come along with it, like a good memory and a passion for certain topics,” Martin said. “But the tradeoff is a lot of qualities that would make anyone’s life difficult, like knowing whether someone is trustworthy or not. Most kids, by the second grade, already have a kind of radar for creepy people, being able to tell if someone is kidding, if someone wants something from you. These kids just don’t have that, and it makes them really vulnerable. It also makes kids very lonely. Just because they don’t socialize well, and in some ways don’t feel the need to socialize as much as other kids do, that doesn’t mean that many of them don’t end up lonely as adults.”
Talking with Martin, it didn’t appear to me that he was mourning the loss of a “normal” child that never existed. He was mourning, in advance, the hardship that he foresees in his actual child’s future. I recognized this, because I do it myself.
While parents with cognitively disabled kids may view the neurodiversity movement with trepidation, it continues to develop, expanding to include disabilities other than autism, drawing rhetoric from the discourse of disability rights, queer theory, and deaf culture. It’s possible that by the time Aurora and Sam are adults, they will be encouraged to consider themselves “cognitive minorities,” with a politics and culture all their own.
Jonathan Mooney is working to create a political umbrella that would cover Sam, Aurora, and other neurological oddballs, and to develop a kind of politics of eccentricity around it. After flunking out of sixth grade because of severe dyslexia and attention problems (he did not learn to read until he was twelve), Mooney went on to become an Ivy League graduate and a national finalist for a Rhodes Scholarship. When he was twenty-three, he co-wrote Learning Outside the Lines, a book on alternative study skills for LD kids. He then co-founded Project Eye to Eye, a mentoring program that pairs LD kids with LD adults, and wrote another book, The Short Bus, which chronicles his road trip across the country in a special-ed bus meeting other “abnormal” people, including a young woman with Down syndrome, a transgender Maine lobsterman, and a severely hyperactive performance artist.
Contrary to the uplifting jacket copy (“Mooney’s search to learn from others once labeled abnormal who have learned to live in beautifully original ways”), I found the book engaging but not especially cheering. The performance artist’s ADHD has rendered him more or less a failure, despite his brilliantly original comic sensibility. The lobsterman is being harassed by developers intent on turning his town into a resort community. The girl with Down syndrome gets fired from her part-time job at McDonald’s. But I was intrigued by Mooney’s effort to unite disparate misfits with the battle cry “Normal people suck.” Along with autism rights activists, he takes society to task for pathologizing what may be normal human variation, expanding the umbrella to claim kinship with an eight-year-old deaf-blind girl and a teenager with cerebral palsy. The book’s apotheosis comes when his eccentric uncle reveals to him that he has suffered from mental illness and then advises him, “Normal is so much bigger than we think.”
As appreciative as I was of embracing difference and flipping the bird to the (neurotypical) Man, I wondered if a sense of rebellious group membership with everyone who either wouldn’t or couldn’t conform—from depressive uncles to the deaf-blind—would help Aurora find her way when the childish afterglow of morale-boosting Edison stories wears off. Other than telling normal people that they suck, what is this movement going to do, and how is it going to do it?
“I think in the first place, normal people suck,” Mooney said genially when I put the question to him in a phone interview. The phrase is more tongue-in-cheek than hostile, but with it, Mooney seeks to solidify an oppositional group identity in much the same way any minority does when it pokes fun at the oppressor. “The first thing to understand is that there is a force we are all struggling against, the imperative to be normal,” he said. “This connects me as a dyslexic to somebody with Asperger’s, ADD, autism.”
Mooney went on to tell me that the goals of the movement he envisions are twofold: that every human being has the right to “build an asset-based paradigm” for himself (a self-concept based in an individual’s strengths rather than his societally defined deficits) and that rather than “fixing people,” we should be “fixing systems” of education and employment. “It’s about a core change away from an individual remediation model to a systemic change, a lowering barriers model,” he said.
As much as I believe in self-determination—the right to be different—for adults with cognitive disabilities, it may be unrealistic to ask parents of severely impaired kids to refrain from trying to “fix” them. But lowering barriers? There’s a battle cry that parents and self-advocates should be able to all get behind. If you can just keep a kid going, helping her over the rough patches, giving extra help where it’s needed, and seizing on anything that looks like a strength or a competence—okay, a gift—that kid might surprise you one day. After all, my father, the math failure, ended up working with matrix theory for a living. Michelle Dawson does high-level scientific research. Jonathan Mooney wrote two books and tours the nation giving talks. Imagine what they might have done with an “asset-based paradigm.”
Just when I think I’ve got my Special Child figured out, she surprises me. Not long ago, an artist friend was visiting us, and my kids wanted an art lesson. Yu Ping gave them an assignment to draw a picture of our family having fun in the back yard. I expected her to exclaim over the work of my younger daughter, who has excellent fine motor skills, no disabilities, and draws very well. But to my intense delight, she singled out Aurora’s picture, saying it showed signs of an unusual sensibility, possibly worthy of cultivating. “Her execution is immature and makes it look like she’s the younger one,” Yu Ping said. “But her way of visualizing is very original. You should have her do more art and see what develops.”
As much as reporting on the neurodiversity movement sometimes made me want to punch a wall, I did end up having my consciousness raised by talking to people like Michelle Dawson and Jonathan Mooney. I’m not giving up on “fixing,” but I did start looking for ways of lowering barriers for Aurora, and decided that handwriting was an easily removable obstacle to her learning. The struggle to form letters on a page threatened to derail the development of her ideas, vocabulary, and syntax. So I got permission to take dictation on writing-heavy homework assignments, and to get her started on keyboarding. The result? She writes more complex sentences, it takes a quarter of the time, and rather than viewing me as a homework enforcer, she sees me as an ally and a helpmeet.
Wednesday December 19 on Dr. Phil Parents' Ultimate Test: Dealing with Autism
The ultimate test for any parent is loving a child who is difficult, sometimes frightening, to the whole family. It's a test parents of autistic children are put to daily. Ten-year-old Luce throws screaming tantrums, barks like a dog, and tells his mother, Sarah, that he plans to kill her. Sarah has long felt despair at Luce's out-of-control behavior, yet she was shocked when a doctor diagnosed him with autism. Go inside the daily life of this family, see Luce's wild behavior caught on tape, and learn why Sarah's main coping mechanisms might be putting her at risk. Then, a member of Dr. Phil's own staff achieved miraculous results for her autistic child and her whole family through an intensive program. Could a similar treatment work for Luce? Plus, what causes autism? Several recent media reports and high-profile parents, such as Jenny McCarthy, have pointed the finger at vaccinations. Is there a link? Child care expert and pediatrician Dr. Jim Sears weighs in. Then, imagine having a crime committed against you, but not having a voice or any way to tell someone you'd been wronged. Some mothers in Las Vegas say that's exactly what happened when a teacher allegedly abused their autistic children, and they've filed a lawsuit. Hear them recount the painful details of the alleged abuse. What are their chances of winning in court?
Schools Accused of Pushing Mainstreaming to Cut Costs
By JOHN HECHINGERDecember 14, 2007; Page A1
GREECE, N.Y -- For years, Jonathan Schuster's mother begged the public schools here to put her son in a special program where he could get extra help for his emotional problems. By 11th grade, Jonathan had broken his hand punching a wall and been hospitalized twice for depression -- once because he threatened to kill himself with a pocket knife.
But teachers insisted that Jonathan, who suffers from attention deficit disorder, learning disabilities and bipolar disorder, could get by in regular classrooms. His mother, Kathleen Lerch, says the reason was cost. "It was all about the bottom line," she says. Citing confidentiality, school officials declined to discuss Jonathan's case but said they seek to provide an appropriate education to all children.
1
* * *
Plus, read more about trends in integrating special-needs students, at WSJ.com/Mainstreaming2.
Advocates for the disabled have long promoted the inclusion of special-education children in regular classes, a practice called mainstreaming. Many educators view mainstreaming as an antidote to the warehousing of children with special needs in separate, and often deficient, classrooms and buildings.
Now, some experts and parents complain that mainstreaming has increasingly taken on a new role in American education: a pretext for cost-cutting, hurting the children it was supposed to help. While studies show that mainstreaming can be beneficial for many students, critics say cash-hungry school districts are pushing the practice too hard, forcing many children into classes that can't meet their needs. Inclusion has evolved into "a way of downsizing special education," says Douglas Fuchs, a Vanderbilt University education professor.
Districts have a powerful motivation to cut special-education costs. U.S. schools spend almost twice as much on the average disabled student as they do on a nondisabled peer, according to a 2004 federal study. But the study also found that, in recent years, per-student special-education costs rose more slowly than for the general population. One of the likely reasons, researchers found, was cost savings from mainstreaming.
In 2003, Fairfax County, Va., an affluent Washington, D.C., suburb, hired Gibson Consulting Group to study its special-education program. Gibson, a firm specializing in education, says it has saved clients millions of dollars by "improving productivity and eliminating inefficiencies." The firm's president, Greg Gibson, says mainstreaming nearly always saves money because regular classrooms have fewer teachers per student.
Gibson found that Fairfax spent an average of $14,671 per special-education student in all types of classrooms -- 85% more than for a pupil in general education. At 21 special-education centers, the per-student cost was even higher: $22,195. Mr. Gibson estimated that the district, which currently has a $2.2 billion school budget, could save $229 million through 2015 by closing 16 of the centers and taking other steps to teach more disabled children in regular classrooms.
Fairfax shut down the centers, prompting some parent protests. Fairfax officials acknowledge that the moves reduced costs, but say that children are better off in mainstream classrooms. They would not specify how much has been saved but said it was far less than Mr. Gibson's projections because special-ed students have received additional support.
Robert MacMillan, chair of the special-education department at Bridgewater State College in Massachusetts, says the Plymouth, Mass., public schools are currently cutting costs by moving students from separate centers -- either public ones operated by multiple districts or private facilities -- back into community schools and, where possible, into regular classrooms.
'For the Kids'
Cheryl Jacques, director of Plymouth's Pilgrim Academy, a separate public center primarily for students with emotional and behavioral problems, says her center's enrollment is dropping because districts are trying to be "economically responsible." Though she supports bringing students back to local schools if the children are ready, in some cases districts are likely "keeping kids that don't belong there," she says. Pilgrim charges districts $24,000 a year for each student. At Plymouth's public schools, the average cost of a special-education student runs $13,343. Bruce Cole, Plymouth's director of special education, counters: "I do what's best for the kids."
In the Greece Central School District, with 13,000 students, the push for more mainstreaming began in 1998. That year, Steven Walts, a former Maryland schools administrator, took over as superintendent in this middle-class suburb near Rochester, N.Y., where many work for Eastman Kodak Co. and Xerox Corp.
At the time, Mr. Walts was under pressure from New York state to include more disabled children in regular classrooms. The federal Individuals with Disabilities Education Act requires that students be taught, when possible, in the "least restrictive" environment.
Making Gains
Since Congress started pushing for mainstreaming more than a quarter century ago, many academic studies have found that the practice helps children with disabilities make academic and social gains. The two largest federal studies, each examining the records of 11,000 disabled school-age children, concluded that while failure rates rose, mainstreamed students overall tended to have higher grades and test scores than their counterparts in separate classes.
In Greece, Mr. Walts slashed the number of students referred to special outside schools, cutting separate classrooms and limiting "resource rooms," or learning centers for students with disabilities.
From 1998 to 2005, the percentage of Greece special-education students considered fully included -- spending 80% or more of their day in general education classes -- more than tripled, to 71%, far exceeding the national average of 54%. The number of students receiving special services at all fell below state and federal averages, to 8% from 15%.
Special-education budgets plummeted, too. Between the 1998-99 and 2004-05 school years, Greece reduced its spending on programs for disabled students by 26%, to $13.1 million from $17.6 million. Spending on special education dropped to 8% from 15% of total expenditures.
Upset at what they describe as the district's increasing refusal to provide services, a group of parents began meeting and comparing notes. They suspected that the district was effectively mainstreaming by simply capping the number of students eligible for services. Some children who were classified as special-education students were declassified and placed in regular classrooms with little or no additional help.
Mr. Walts left Greece in 2005 to become superintendent of the Prince William County public schools in Maryland. His office referred questions to Keith Imon, an administrator who also worked with Mr. Walts in Greece. Mr. Imon says Mr. Walts's office never directed employees to deny needed services or set quotas on classifying students as disabled. "I can say without a doubt that he makes all decisions based on what's in the best interests of the kids," says Mr. Imon.
Some school officials agreed with parents' concerns. Josephine Kehoe, who served as interim superintendent after Mr. Walts's departure, says principals told her that before she took over, they felt "pressure to spend the least amount of money possible" on special education.
In 2005, eight families, including Jonathan Schuster's, filed a lawsuit, accusing Greece of denying disabled children a "free appropriate public education" by restricting access to special classrooms, eliminating students' special-education eligibility and dumping them in regular classes.
The suit, which became a class action in U.S. District Court in Rochester, cited a 17-year-old 11th-grader with Asperger's syndrome, a form of autism. The student, identified only by the initials "K.B.," made the honor roll when receiving instruction in a separate, 15-student class. But when placed in a regular classroom in the 2004-05 school year, K.B. got failing grades, the suit says.
To settle the lawsuit, the families and the school district agreed to appoint Margaret McLaughlin, a special-education professor at the University of Maryland, as a joint expert to evaluate the district's program. After examining documents and conducting extensive interviews, Prof. McLaughlin says she was "quite stunned" by how much cost was influencing the push toward mainstreaming.
"It was, boom, one year, the kid was in a private placement and the next year he was dumped into a regular school with really limited support," she says.
No Deficiencies
In a legal settlement in August, the district acknowledged no deficiencies but agreed to place no limit on the number of students who would be placed in separate programs or receive other services. Under the consent decree, the number of separate classrooms with eight students and a teacher and an aide would increase from nine in the 2006-07 school year to a dozen in 2007-08. Already, since the 2004-05 school year, the percentage of students in fully inclusive classrooms has declined to 59% from 71%.
Steven Achramovitch, who became superintendent in November 2006, declined to discuss the lawsuit's allegations or Prof. McLaughlin's conclusions. Over the past year, the district has hired about 35 new special-education teachers, a 25% increase, and added $3 million to the 2006-07 school year's $14 million special-education budget. "It's going to be more costly, no question about it," he says. Mr. Achramovitch adds that the moves are unconnected to the lawsuit. "We'll do whatever is in the best interests of our kids," he says.
Deborah Hoeft, Greece's special-education director, says district surveys show that most parents of disabled children are pleased with the system's services.
Example of Success
Amid the controversy, Greece received national attention last year when Jason McElwain, then a 17-year-old senior with autism, scored 20 points in the last four minutes of a high-school basketball game. Jason met President Bush, and school officials hailed the student as an example of the success of including disabled children in school-wide activities.
Some parents praise recently added programs. Sharon Eddy says her son Ryan, now a fifth-grader, floundered in mainstream classes until third grade, when he transferred into a separate autism class with only eight children. The new setting "has been wonderful," she says.
But others say the district is still denying services in the name of mainstreaming. Christine Latus, a former elementary-school teacher, says her son Michael, a fifth-grader with dyslexia, needs a separate, specialized program either within the district or at a local private school for children with learning problems. Instead, the system has placed 10-year-old Michael in a mainstream classroom with 30 students, 12 of whom have special needs.
On a recent morning, Lisa Farina, Michael's teacher, asked him to stand in front of the class since he had grasped the meaning of a graph during a smaller discussion. At first, Michael froze, his eyes downcast. Then, he muttered a few nearly inaudible words about his findings.
At home after school that day, Michael, even with the help of a computer, struggled to write 10 sentences about a book he had read. "In reading, we're not getting too much help, except when we go into the smaller group," he said.
Michael's reading lags behind his peers by at least two grade levels. On a homework assignment this year, analyzing a political cartoon, Michael wrote in a nearly indecipherable scrawl: "The message seas that the it dos not wreak."
Individual Attention
Ms. Farina says she won't discuss individual students. But she says she has full-time help from a special-education instructor, as well as visits from other support staff. She says the school doesn't have enough students for a special class for dyslexia. She says students receive individual attention, working in groups of six to eight.
Meanwhile, Jonathan Schuster, the student whose mother sought help for his emotional problems, says the school system should have pulled him out of mainstream classrooms much earlier.
Around the time the lawsuit was filed, the Greece schools agreed to put Jonathan in a separate class especially for children with emotional problems. He settled down and graduated -- though with a 2.0 grade point average. Now 19 years old, Jonathan lives at home and works in a supermarket stockroom.
"It was too late," Jonathan says. "I don't feel I met my full potential."
Write to John Hechinger at john.hechinger@wsj.com3
GREECE, N.Y -- For years, Jonathan Schuster's mother begged the public schools here to put her son in a special program where he could get extra help for his emotional problems. By 11th grade, Jonathan had broken his hand punching a wall and been hospitalized twice for depression -- once because he threatened to kill himself with a pocket knife.
But teachers insisted that Jonathan, who suffers from attention deficit disorder, learning disabilities and bipolar disorder, could get by in regular classrooms. His mother, Kathleen Lerch, says the reason was cost. "It was all about the bottom line," she says. Citing confidentiality, school officials declined to discuss Jonathan's case but said they seek to provide an appropriate education to all children.
1
* * *
Plus, read more about trends in integrating special-needs students, at WSJ.com/Mainstreaming2.
Advocates for the disabled have long promoted the inclusion of special-education children in regular classes, a practice called mainstreaming. Many educators view mainstreaming as an antidote to the warehousing of children with special needs in separate, and often deficient, classrooms and buildings.
Now, some experts and parents complain that mainstreaming has increasingly taken on a new role in American education: a pretext for cost-cutting, hurting the children it was supposed to help. While studies show that mainstreaming can be beneficial for many students, critics say cash-hungry school districts are pushing the practice too hard, forcing many children into classes that can't meet their needs. Inclusion has evolved into "a way of downsizing special education," says Douglas Fuchs, a Vanderbilt University education professor.
Districts have a powerful motivation to cut special-education costs. U.S. schools spend almost twice as much on the average disabled student as they do on a nondisabled peer, according to a 2004 federal study. But the study also found that, in recent years, per-student special-education costs rose more slowly than for the general population. One of the likely reasons, researchers found, was cost savings from mainstreaming.
In 2003, Fairfax County, Va., an affluent Washington, D.C., suburb, hired Gibson Consulting Group to study its special-education program. Gibson, a firm specializing in education, says it has saved clients millions of dollars by "improving productivity and eliminating inefficiencies." The firm's president, Greg Gibson, says mainstreaming nearly always saves money because regular classrooms have fewer teachers per student.
Gibson found that Fairfax spent an average of $14,671 per special-education student in all types of classrooms -- 85% more than for a pupil in general education. At 21 special-education centers, the per-student cost was even higher: $22,195. Mr. Gibson estimated that the district, which currently has a $2.2 billion school budget, could save $229 million through 2015 by closing 16 of the centers and taking other steps to teach more disabled children in regular classrooms.
Fairfax shut down the centers, prompting some parent protests. Fairfax officials acknowledge that the moves reduced costs, but say that children are better off in mainstream classrooms. They would not specify how much has been saved but said it was far less than Mr. Gibson's projections because special-ed students have received additional support.
Robert MacMillan, chair of the special-education department at Bridgewater State College in Massachusetts, says the Plymouth, Mass., public schools are currently cutting costs by moving students from separate centers -- either public ones operated by multiple districts or private facilities -- back into community schools and, where possible, into regular classrooms.
'For the Kids'
Cheryl Jacques, director of Plymouth's Pilgrim Academy, a separate public center primarily for students with emotional and behavioral problems, says her center's enrollment is dropping because districts are trying to be "economically responsible." Though she supports bringing students back to local schools if the children are ready, in some cases districts are likely "keeping kids that don't belong there," she says. Pilgrim charges districts $24,000 a year for each student. At Plymouth's public schools, the average cost of a special-education student runs $13,343. Bruce Cole, Plymouth's director of special education, counters: "I do what's best for the kids."
In the Greece Central School District, with 13,000 students, the push for more mainstreaming began in 1998. That year, Steven Walts, a former Maryland schools administrator, took over as superintendent in this middle-class suburb near Rochester, N.Y., where many work for Eastman Kodak Co. and Xerox Corp.
At the time, Mr. Walts was under pressure from New York state to include more disabled children in regular classrooms. The federal Individuals with Disabilities Education Act requires that students be taught, when possible, in the "least restrictive" environment.
Making Gains
Since Congress started pushing for mainstreaming more than a quarter century ago, many academic studies have found that the practice helps children with disabilities make academic and social gains. The two largest federal studies, each examining the records of 11,000 disabled school-age children, concluded that while failure rates rose, mainstreamed students overall tended to have higher grades and test scores than their counterparts in separate classes.
In Greece, Mr. Walts slashed the number of students referred to special outside schools, cutting separate classrooms and limiting "resource rooms," or learning centers for students with disabilities.
From 1998 to 2005, the percentage of Greece special-education students considered fully included -- spending 80% or more of their day in general education classes -- more than tripled, to 71%, far exceeding the national average of 54%. The number of students receiving special services at all fell below state and federal averages, to 8% from 15%.
Special-education budgets plummeted, too. Between the 1998-99 and 2004-05 school years, Greece reduced its spending on programs for disabled students by 26%, to $13.1 million from $17.6 million. Spending on special education dropped to 8% from 15% of total expenditures.
Upset at what they describe as the district's increasing refusal to provide services, a group of parents began meeting and comparing notes. They suspected that the district was effectively mainstreaming by simply capping the number of students eligible for services. Some children who were classified as special-education students were declassified and placed in regular classrooms with little or no additional help.
Mr. Walts left Greece in 2005 to become superintendent of the Prince William County public schools in Maryland. His office referred questions to Keith Imon, an administrator who also worked with Mr. Walts in Greece. Mr. Imon says Mr. Walts's office never directed employees to deny needed services or set quotas on classifying students as disabled. "I can say without a doubt that he makes all decisions based on what's in the best interests of the kids," says Mr. Imon.
Some school officials agreed with parents' concerns. Josephine Kehoe, who served as interim superintendent after Mr. Walts's departure, says principals told her that before she took over, they felt "pressure to spend the least amount of money possible" on special education.
In 2005, eight families, including Jonathan Schuster's, filed a lawsuit, accusing Greece of denying disabled children a "free appropriate public education" by restricting access to special classrooms, eliminating students' special-education eligibility and dumping them in regular classes.
The suit, which became a class action in U.S. District Court in Rochester, cited a 17-year-old 11th-grader with Asperger's syndrome, a form of autism. The student, identified only by the initials "K.B.," made the honor roll when receiving instruction in a separate, 15-student class. But when placed in a regular classroom in the 2004-05 school year, K.B. got failing grades, the suit says.
To settle the lawsuit, the families and the school district agreed to appoint Margaret McLaughlin, a special-education professor at the University of Maryland, as a joint expert to evaluate the district's program. After examining documents and conducting extensive interviews, Prof. McLaughlin says she was "quite stunned" by how much cost was influencing the push toward mainstreaming.
"It was, boom, one year, the kid was in a private placement and the next year he was dumped into a regular school with really limited support," she says.
No Deficiencies
In a legal settlement in August, the district acknowledged no deficiencies but agreed to place no limit on the number of students who would be placed in separate programs or receive other services. Under the consent decree, the number of separate classrooms with eight students and a teacher and an aide would increase from nine in the 2006-07 school year to a dozen in 2007-08. Already, since the 2004-05 school year, the percentage of students in fully inclusive classrooms has declined to 59% from 71%.
Steven Achramovitch, who became superintendent in November 2006, declined to discuss the lawsuit's allegations or Prof. McLaughlin's conclusions. Over the past year, the district has hired about 35 new special-education teachers, a 25% increase, and added $3 million to the 2006-07 school year's $14 million special-education budget. "It's going to be more costly, no question about it," he says. Mr. Achramovitch adds that the moves are unconnected to the lawsuit. "We'll do whatever is in the best interests of our kids," he says.
Deborah Hoeft, Greece's special-education director, says district surveys show that most parents of disabled children are pleased with the system's services.
Example of Success
Amid the controversy, Greece received national attention last year when Jason McElwain, then a 17-year-old senior with autism, scored 20 points in the last four minutes of a high-school basketball game. Jason met President Bush, and school officials hailed the student as an example of the success of including disabled children in school-wide activities.
Some parents praise recently added programs. Sharon Eddy says her son Ryan, now a fifth-grader, floundered in mainstream classes until third grade, when he transferred into a separate autism class with only eight children. The new setting "has been wonderful," she says.
But others say the district is still denying services in the name of mainstreaming. Christine Latus, a former elementary-school teacher, says her son Michael, a fifth-grader with dyslexia, needs a separate, specialized program either within the district or at a local private school for children with learning problems. Instead, the system has placed 10-year-old Michael in a mainstream classroom with 30 students, 12 of whom have special needs.
On a recent morning, Lisa Farina, Michael's teacher, asked him to stand in front of the class since he had grasped the meaning of a graph during a smaller discussion. At first, Michael froze, his eyes downcast. Then, he muttered a few nearly inaudible words about his findings.
At home after school that day, Michael, even with the help of a computer, struggled to write 10 sentences about a book he had read. "In reading, we're not getting too much help, except when we go into the smaller group," he said.
Michael's reading lags behind his peers by at least two grade levels. On a homework assignment this year, analyzing a political cartoon, Michael wrote in a nearly indecipherable scrawl: "The message seas that the it dos not wreak."
Individual Attention
Ms. Farina says she won't discuss individual students. But she says she has full-time help from a special-education instructor, as well as visits from other support staff. She says the school doesn't have enough students for a special class for dyslexia. She says students receive individual attention, working in groups of six to eight.
Meanwhile, Jonathan Schuster, the student whose mother sought help for his emotional problems, says the school system should have pulled him out of mainstream classrooms much earlier.
Around the time the lawsuit was filed, the Greece schools agreed to put Jonathan in a separate class especially for children with emotional problems. He settled down and graduated -- though with a 2.0 grade point average. Now 19 years old, Jonathan lives at home and works in a supermarket stockroom.
"It was too late," Jonathan says. "I don't feel I met my full potential."
Write to John Hechinger at john.hechinger@wsj.com3
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