CALENDAR
Wed:11/12 @ 6 pm Garden City, NY Guardianship in NYS. An overview workshop for parents and caregivers. For location and detailed information RSVP to (516) 521 1099
Thursday 11/20 @ 12 pm Garden City, NY. Our core workshop: Addressing the long term legal, financial and quality of life issues families with special needs children and adults face. For location and detailed information RSVP to (516) 521 1100.
Thursday 11/27
HAPPY
THANKSGIVING
Tues 12/2 @ 5 PM Garden City, NY. Protecting benefit eligibility: A focus on special needs trusts, wills and legal family planning. For location and detailed information RSVP to (516) 521 1100.
PFSS Parent Training & Provider Training Courses
The Preventive Family Support Services is a 501c3, Not-for-profit division of the Special Needs Advisory Partners and is dedicated to bringing free, educational parent and provider trainings to schools, support groups, lectures,PTA's and our local community. If you would like to schedule a workshop, please call our main office to set up a meeting to discuss the group ypu'd like us to present to.
WORKSHOP SERIES
“Securing the long term quality of life for disabled individuals” Our core workshop and critical first step introduction to families addressing many areas of concern. Topics include information on understanding federal government benefits, navigating the SSI maze, addressing the legal and financial concerns of families with special needs children and adults, the importance of a properly drafted last will and testament, creating a letter of intent, aging out of the school system, finding support groups and lay advocates and the HIPA Act and it’s impact on the health care decisions of disabled individuals. Workshop runs approx 1:30 min
“Understanding benefit eligibility guidelines-Applying for OMRDD services in NY”
A workshop designed to introduce families to the benefits and entitlements that are offered to individuals with a formal diagnosis through OMRDD, The Office Of Mentally Retarded and Developmentally Delayed Persons in NYS. This workshop explains who and hat DDSO’s are and how they help, it defines the role of an MSC and advocates. It covers misconceptions of the “Medicaid” and “Medicaid Waiver” programs and helps families understand that benefit eligibility is NOT always based on income, but can be based on diagnosis. We address the importance of obtaining and securing eligibility, keeping eligibility and how even for families earning an above average income, there are services and programs that money can’t buy that loved ones must remain eligible for. Workshop runs approx 1 hr.
“An overview of Guardianship in NYS” this workshop explains the concept of becoming guardian of your own child with a disability at age of majority. We discuss the pro’s and con’s while we remain neutral and supportive of a families choice. We discuss how to choose a proper guardian, considerations when living as an elderly disabled individual, alternative housing opportunities, and the actual filing and surrogates court process entailed when acquiring guardianship. Workshop runs approx 1:30 min
"A Helping Hand For MSC's" Introducing Medicaid Service Coordinators and their agencies to PFSS and the resources we can provide to their consumers. This brief introduction helps MSC's identify specific needs of consumers that PFSS and SNAP can train and assist them with. MSC's who would like to participate in our helping hands program get weekly updates with articles, information, events, and training materials as another resource to provide their consumers. Workshop runs approx. 45 minutes
“Creating Your Letter of Intent" This workshop is by invitation only and is offered to families who have come through the process of securing their legal documents. Having the Letter of intent without securing legally the security of lived ones is offering false security. Our workshop is an interactive exercise where we help our families create their special needs loved ones' handbook. Topics include, transfer of critical and vital information, future planning for your loved ones' quality of life, on boarding a guardian to the real day to day care your loved one needs, documenting ideals for your loved ones' as they age, feelings on health, dating opportunities, religion, sex life, housing opportunities, finances and more. Workshop takes place over 2 days for 4 hours each session.
"Legacy Giving" Doing well by doing good. The basics behind tax favorable and philanthropic giving. Leveraging your assets and estate plan as a way to create a lifetime of care and consideration for a person, organization, or foundation. This workshop is done for individuals and families as part of their estate planning process. It has also been presented to philanthropic benefactors invited by non profit organizations as part of aligning their vision for continued support, and creative legacy gifting opportunities. Presentation time varies.
“The ABC’s of IEP’s”, The Americans With Disabilities Education Act Allows disabled individuals access to a free, fair public education. Our workshop addresses the importance and distinction between private vs in district evaluations, What to look for in an IEP (Individualized Education Plan), understanding the diagnosis and it’s prescribed care in a educational facility, what to do if your childs Individualized Education Plan is being “broken”, a parents rights to mediation and advocacy in the school districts, legal intervention methods, private placement schools and educational/living facilities. Workshop runs approx 45 min
"Planning For Today’s Alternative Lifestyle Families" When it comes to family matters, many of the legal, financial and quality of life considerations that apply to same sex couples can be confusing. Understanding how to protect your loved ones in this special needs situation can be confusing and complex. Addressing concerns now and in the future concerning children and their safety along with ensuring their emotional and physical well being is important for every family. Topics include guardianship of children, purchasing real estate and owning joint assets, the importance of wills and trusts, Health Information Privacy Act and allowing life partners to make critical health and legal decisions on their partners behalf, pension protection strategies, employer benefits, and retirement planning for same sex couples. Workshop runs approx 1:30 min.
For more information on any of these topics please call our main office and schedule a consultation. All workshops are copywrighted and presented by trained staff members of the Preventive Family Support Services.
xxx The Special Needs Advisory & Preventive Family Support Services November Monthly Newsletter
________________________________________
GUARDIANSHIP
For many parents, making decisions for children with special needs is a lifelong commitment. A Parents goal is always to take actions toward ensuring their loved ones health, well being, safety and ability to be cared for and age with dignity and respect. In order for parents to maintain their decision making authority in the lives if their loved ones, some may have to obtain legal guardianship of their own children as they reach the age of majority.
This can be a foreign concept to many, since caring for their children have become second nature to them. Many find out the hard way that they are legally locked out of the decision making process when they try to act in a situation and are denied information or other privlileges they once easily accessed. Some examples of these situations are when making health care decisions, advocating at school for their children, making legal decisions, and in all financial matters.
Parents may find their once willing doctors, not so willing to share information on a patient who has turned the age of majority, or their childs school unwilling to discuss her report card or IEP with mom and dad becuase the student is 19 and an adult.
There are different forms of guardianship and not all children with special needs should have guardians, but a good majority should and as parents who care for their children seek solutions to this dilemma, they should be aware of their rights,or lack there of , and their childrens rights, which are ever increasing with age, regardless of a diagnosis.
For help understanding more about Guardianship proceedings where you live and to discuss the pros and cons of guardianship for your loved one, attend on of our upcoming workshops or call our main office to schedule an orientation.
FOCUS ON FAMILY
Each month we look to bring you inspirational stories from our families. Each of them have unique, wonderful and loving children with special needs. This month we bring you our interview with Peter, a single dad raising his son MarcAnthony on his own since MarcAnthony was a baby. Peter is an amazing dad, hard working father, and is dedicated to providing the best care and every opportunity available to his son. Peter is an EMT for the NY Fire Dep't. His son MarcAnthony was diagnosed at birth with Cerebral Palsy, developmental delays, Asthma and is legally blind. We knew his story would serve as an inspiration to single parents raising special needs children everywhere. Thanks Peter!
Peter &
MarcAnthony
Question: Tell us about the people in MarcAnthony’s Life:
Peter: I get a lot of help from my mother, sister and my nephew. They are very supportive of me and Marc and love us very much. They have been there through it all and if anything ever happened to me, I know they would be there for him 100%. When I want to get away for the weekend to refresh my mind and have some down time they will stay with Marc and I feel comfortable with the level of care they can provide him and it gives me peace of mind.
Question: What are some of the pressures you feel as a single parent?
Peter: At times I feel overwhelmed but I can’t let those feelings take over. What I do every day is for Marc's best and as long as I take good care of him, we will be all right. Since he was a small baby his mother has had no contact with him and takes no part in the joy of sharing his life. She has left this responsibility up to me, and I do all I can to fend for Marc's rights as a special needs child. At this point I really feel that Marc is better off with me instead of with his mother because she should naturally want to be a part of his life, yet, she chooses not to be there for him.
Question: Tell us about a typical day at your house
Peter: A normal day starts at 5 am with me getting up for work and then getting Marc ready starting at 5:30 am . I have to get him cleaned up and dressed with his backbrace, and then I have to put him into his wheelchair. My mom comes to make breakfast and I feed him and spend time with him before school so by 6am I'm feeding him breakfast and between 6:20-6:30am I'm out the door to be at work by 7:30 am . Every morning before I go I make sure that Marc has all his school stuff in his school bag and has his jacket on and he is ready. By 7:15 am my mother takes him down on the elevator (if it is working) to meet the school bus by 7:30am . Then Marc is at school until 3pm and usually by 4:15 pm Marc is home and I'm home shortly after. We go over what went on at school and then it’s time for dinner.
Question: What do you and MarcAnthony do at home? What things does he like to get into?
Peter: When he is home from school Marc is playing, watching tv and being a little kid. He does not get any home work but I reinforce the things he learned during the day to make sure he spends time studying and so I know what’s going on at school. Marc loves interactive toys, games, tv, music .going outside, swimming in the pool. He is very smart for a child with special needs.
Question: What are some of the challenges raising your son who is growing into a young man?
Peter: Giving Marc a bath is very hard since I live in an apartment I do not have room for special equipment to lift him. I have to lift him myself and put him in the tub to bathe him and lift him out to dry him in the bedroom. To stay on track, I try to do this every night between 7:00 to 7:30 pm . As he gets older and heavier it is tuff, but I am strong and he need me to do this for him. When Marc gets sick his cold triggers his Asthma which takes a lot out of him. If he is getting sick he needs me and I would have to stay home and treat him with his asthma meds. Usually after a few treatments, time with me and some rest my mother can stay with until he is 100% so I don't have to miss work a lot. Needless to say I do not get a lot of chances to take vacations because most of my vacation time is used on Marc when he gets sick. I do enjoy scuba diving and have a time share I try and get to. I have friends I am close to who know me and Marc and enjoy spending time with is and really support me as a dad.
Question: What are some of the challenges you have faced as a parent that other parents might be going through?
Peter: I think hardest thing I had to deal with over the year is the not knowing. Where to find the information needed to help me and my son has never easy. There are not many support groups where we live and the ones we have found are at times that I can not make.
Any advice for single parents and parents in general raising special needs children?
Get informed! I think the best thing to do is to ask your child school about programs, get a social worker to help you and talk to as many resources as you can. Get connected to other parents and find ways to be involved with networks of information.
Wednesday, October 29, 2008
Monday, October 27, 2008
10 Myths About Autism
Experts Examine Misconceptions About Autism
By LARA SALAHI and RADHA CHITALE
ABC News Medical Unit
Oct. 23, 2008 —
As the number of Americans diagnosed with autism spectrum disorders climbs, so, too, does the number of questions surrounding this disorder. Namely, what is autism, and what is causing a rise in autism diagnoses among adults and children nationwide?
Click here to go to ABC News' On Call+ Autism page.
You will find many interesting articles: (http://abcnews.go.com/health/autism)
Amid these questions, television shows and magazines feature a barrage of stories and imagery -- families rallying for and against vaccines, debates between medical experts pointing to both genetic and environmental causes, and images of individuals diagnosed with autism who struggle to speak and function independently, while others can interact with others and are able to hold jobs. For many, these competing messages may make this already complex condition even more confusing.
Fortunately, doctors and researchers are learning more about the causes and characteristics of autism.
The following are answers to 10 common myths, that may help us better recognize the range of symptoms we call autism spectrum disorders.
Myth: Autism is an emotional or mental health disorder.
While physical or social behaviors of individuals with autism may suggest that they have a psychological disorder, autism is actually a biological illness that affects the brain's growth and development.
"In the case of autism, the parts of the brain that are most affected seem to impact three areas of functioning," said Michael Alessandri, executive director of the University of Miami's Center for Autism and Related Disabilities. "Social behavior, communication and restricted and repetitive rituals and routines are ways that the child or the adult with autism interact with the environment."
Although autism is now understood to be a neurodevelopmental disorder, Alessandri, an expert for ABCNews.com's OnCall+ Autism section, said autism can still be considered a complex disorder because its range of symptoms is so diverse.
"Scientists and clinicians now understand that autism is not a singular entity, but rather, a variety of syndromes that ... create the autism spectrum disorders," said Alessandri.
Myth: There is an autism epidemic.
The word "epidemic" often implies a sudden burst in the number of individuals within a fixed time who have, in this case, autism.
Visit the OnCall+ Autism Center
Although the CDC reports that one out of 150 children born have an autism spectrum disorder, some experts are quick to question whether a surge in autism cases is actually occurring. Some are more likely to link the upshot of numbers to the combination of a broader definition of autism, a wider spectrum, and an earlier diagnosis.
"The condition has not become more widespread, but there is more diagnosis of autism," said Dr. Bob Marion, director of Children's Evaluation and Rehabilitation Center at Albert Einstein College of Medicine in New York.
Sheila Wagner, assistant director of the Autism Center at Emory University in Atlanta, added that more awareness of symptoms has allowed more people to identify individuals who have autism.
"There's a lot of media exposure to autism, in television and movies," said Wagner. "This has made [autism] more recognizable in the lay population."
Myth: Autism can be cured.
Some parents may allude to a certain diet, medicine, or set of behavioral treatments that have cured their autistic children, where other parents may try the same mode of treatment and see no results. While there are treatments created to improve an autistic child's ability, there is no known cure for autism.
"We do know that with early intervention with younger children and Applied Behavioral Analysis, we can improve a child's functioning," said Marion.
Applied Behavior Analysis, or ABA, is one form of therapy for newly diagnosed children. It includes repeating behavioral activities to improve a child's social and physical functions.
According to Marion, there is no blanket treatment for autism, and it is up to the individual's doctor to assess what treatment will offer the best benefit for each autistic child.
In some cases, Marion said, behaviors, including eye contact, interaction with others and development of language skills, will significantly improve -- but the underlying biological disorder will not change.
"And that is definitely not a cure," he said.
Myth: Autism is the result of cold and unemotional parents.
In the 1940s, Austrian doctor Bruno Bettelheim theorized that autism was a result of parents, especially mothers, who did not love their children. Children in such situations would withdraw and become autistic, Bettelheim believed.
However, researchers have thawed the "refrigerator mother" theory. According to medical experts, a child's autism diagnosis has nothing to do with how the child is raised.
"We don't know if there are any things that a parent can do or not do, conclusively, will determine whether their child gets autism or not," said Dr. Daniel Geshwind, director of UCLA's neurogenetics program and center for autism research. "Most of the evidence right now points to there being a very strong genetic predisposition in most cases of autism, but not all."
Myth: Individuals with autism always have hidden or exceptional talents.
Stephen Wiltshire, 34, is best known as the human camera. He can replicate architectural designs and landscapes down to each blade of grass -- even if he is only given one opportunity to observe the area he is drawing. Wiltshire has reproduced panoramic scenes of Tokyo, Rome and London by memory after one short helicopter ride over each of the cities.
Wiltshire is an autistic savant. That is, he has extraordinary cognitive skills that allow him to recall details of designs, numbers and measurements that are normally considered too difficult to remember.
The concept of an autistic individual as a savant may have been popularized by Dustin Hoffman's character in the movie "Rain Man."
But while Marion acknowledges that there is a minority group of individuals with autism who have unusual islets of skills, savants are an unrealistic portrayal of the majority of individuals on the spectrum. He said most do not have talents or skills that distinguish themselves by extraordinary talents.
"There are strengths and weaknesses in every child," said Marion. "It's important for every child with autism to have a multidisciplinary evaluation by health professionals who have experience in assessing a child's skills and deficits, to come up with an educational plan that will benefit the child the most."
Myth: Repetitive or ritualistic behaviors should be stopped.
One of the classic indicators of autism is repetitive and ritualistic behaviors, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), a physician's tool to diagnose autism.
While these behaviors -- which can include hand flapping, banging on walls or rocking back and forth -- may seem odd, they do have a purpose: they can be calming; they can feel good; and they may help the individual communicate with others, said Wagner.
Repetitive behaviors may only pose a problem if they begin interfering in family life or if they prevent those with autism from functioning independently, Wagner added.
However, according to Dr. Pauline Filipek, associate professor of pediatrics and neurology at the University of California, Irvine, a child may learn to outgrow repetitive behaviors.
"Often, as an individual gets older, they learn that such behaviors make them stand out in society, and they learn to miniaturize those behaviors," said Filipek.
Myth: Individuals with autism are unable to build social relationships.
"This is a generalization and needs to be individualized because the spectrum is so wide," said Marion.
In short, social relationships are possible for some individuals on the autism spectrum, but not for others on the most severe end of the spectrum, Marion said.
The DSM IV, which includes diagnosing guidelines for autism, lists "impairment in social interaction" as one indication that an individual can have an autism spectrum disorder. But not every child on the autism spectrum will have the same degree of difficulty connecting with others.
"At the most severe end of the spectrum, yes, that's true," said Marion. "But there is a multitude of children who have friends, and even some who do have close relationships."
Myth: Autistic individuals are a danger to society.
"It is a disservice to think that all people with autism are dangerous," said Wagner.
The idea rises from numerous news stories of individuals diagnosed with Asperger's syndrome, a high form of autism, who have been accused of burglary and, at times, murder.
However, if you look at the entire population of people on the autism spectrum, the number of people involved in crime is small, said Wagner. If someone with autism were to act out, it may be due to frustration or perhaps physical or emotional overstimulation, not necessarily malice, she said.
By LARA SALAHI and RADHA CHITALE
ABC News Medical Unit
Oct. 23, 2008 —
As the number of Americans diagnosed with autism spectrum disorders climbs, so, too, does the number of questions surrounding this disorder. Namely, what is autism, and what is causing a rise in autism diagnoses among adults and children nationwide?
Click here to go to ABC News' On Call+ Autism page.
You will find many interesting articles: (http://abcnews.go.com/health/autism)
Amid these questions, television shows and magazines feature a barrage of stories and imagery -- families rallying for and against vaccines, debates between medical experts pointing to both genetic and environmental causes, and images of individuals diagnosed with autism who struggle to speak and function independently, while others can interact with others and are able to hold jobs. For many, these competing messages may make this already complex condition even more confusing.
Fortunately, doctors and researchers are learning more about the causes and characteristics of autism.
The following are answers to 10 common myths, that may help us better recognize the range of symptoms we call autism spectrum disorders.
Myth: Autism is an emotional or mental health disorder.
While physical or social behaviors of individuals with autism may suggest that they have a psychological disorder, autism is actually a biological illness that affects the brain's growth and development.
"In the case of autism, the parts of the brain that are most affected seem to impact three areas of functioning," said Michael Alessandri, executive director of the University of Miami's Center for Autism and Related Disabilities. "Social behavior, communication and restricted and repetitive rituals and routines are ways that the child or the adult with autism interact with the environment."
Although autism is now understood to be a neurodevelopmental disorder, Alessandri, an expert for ABCNews.com's OnCall+ Autism section, said autism can still be considered a complex disorder because its range of symptoms is so diverse.
"Scientists and clinicians now understand that autism is not a singular entity, but rather, a variety of syndromes that ... create the autism spectrum disorders," said Alessandri.
Myth: There is an autism epidemic.
The word "epidemic" often implies a sudden burst in the number of individuals within a fixed time who have, in this case, autism.
Visit the OnCall+ Autism Center
Although the CDC reports that one out of 150 children born have an autism spectrum disorder, some experts are quick to question whether a surge in autism cases is actually occurring. Some are more likely to link the upshot of numbers to the combination of a broader definition of autism, a wider spectrum, and an earlier diagnosis.
"The condition has not become more widespread, but there is more diagnosis of autism," said Dr. Bob Marion, director of Children's Evaluation and Rehabilitation Center at Albert Einstein College of Medicine in New York.
Sheila Wagner, assistant director of the Autism Center at Emory University in Atlanta, added that more awareness of symptoms has allowed more people to identify individuals who have autism.
"There's a lot of media exposure to autism, in television and movies," said Wagner. "This has made [autism] more recognizable in the lay population."
Myth: Autism can be cured.
Some parents may allude to a certain diet, medicine, or set of behavioral treatments that have cured their autistic children, where other parents may try the same mode of treatment and see no results. While there are treatments created to improve an autistic child's ability, there is no known cure for autism.
"We do know that with early intervention with younger children and Applied Behavioral Analysis, we can improve a child's functioning," said Marion.
Applied Behavior Analysis, or ABA, is one form of therapy for newly diagnosed children. It includes repeating behavioral activities to improve a child's social and physical functions.
According to Marion, there is no blanket treatment for autism, and it is up to the individual's doctor to assess what treatment will offer the best benefit for each autistic child.
In some cases, Marion said, behaviors, including eye contact, interaction with others and development of language skills, will significantly improve -- but the underlying biological disorder will not change.
"And that is definitely not a cure," he said.
Myth: Autism is the result of cold and unemotional parents.
In the 1940s, Austrian doctor Bruno Bettelheim theorized that autism was a result of parents, especially mothers, who did not love their children. Children in such situations would withdraw and become autistic, Bettelheim believed.
However, researchers have thawed the "refrigerator mother" theory. According to medical experts, a child's autism diagnosis has nothing to do with how the child is raised.
"We don't know if there are any things that a parent can do or not do, conclusively, will determine whether their child gets autism or not," said Dr. Daniel Geshwind, director of UCLA's neurogenetics program and center for autism research. "Most of the evidence right now points to there being a very strong genetic predisposition in most cases of autism, but not all."
Myth: Individuals with autism always have hidden or exceptional talents.
Stephen Wiltshire, 34, is best known as the human camera. He can replicate architectural designs and landscapes down to each blade of grass -- even if he is only given one opportunity to observe the area he is drawing. Wiltshire has reproduced panoramic scenes of Tokyo, Rome and London by memory after one short helicopter ride over each of the cities.
Wiltshire is an autistic savant. That is, he has extraordinary cognitive skills that allow him to recall details of designs, numbers and measurements that are normally considered too difficult to remember.
The concept of an autistic individual as a savant may have been popularized by Dustin Hoffman's character in the movie "Rain Man."
But while Marion acknowledges that there is a minority group of individuals with autism who have unusual islets of skills, savants are an unrealistic portrayal of the majority of individuals on the spectrum. He said most do not have talents or skills that distinguish themselves by extraordinary talents.
"There are strengths and weaknesses in every child," said Marion. "It's important for every child with autism to have a multidisciplinary evaluation by health professionals who have experience in assessing a child's skills and deficits, to come up with an educational plan that will benefit the child the most."
Myth: Repetitive or ritualistic behaviors should be stopped.
One of the classic indicators of autism is repetitive and ritualistic behaviors, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), a physician's tool to diagnose autism.
While these behaviors -- which can include hand flapping, banging on walls or rocking back and forth -- may seem odd, they do have a purpose: they can be calming; they can feel good; and they may help the individual communicate with others, said Wagner.
Repetitive behaviors may only pose a problem if they begin interfering in family life or if they prevent those with autism from functioning independently, Wagner added.
However, according to Dr. Pauline Filipek, associate professor of pediatrics and neurology at the University of California, Irvine, a child may learn to outgrow repetitive behaviors.
"Often, as an individual gets older, they learn that such behaviors make them stand out in society, and they learn to miniaturize those behaviors," said Filipek.
Myth: Individuals with autism are unable to build social relationships.
"This is a generalization and needs to be individualized because the spectrum is so wide," said Marion.
In short, social relationships are possible for some individuals on the autism spectrum, but not for others on the most severe end of the spectrum, Marion said.
The DSM IV, which includes diagnosing guidelines for autism, lists "impairment in social interaction" as one indication that an individual can have an autism spectrum disorder. But not every child on the autism spectrum will have the same degree of difficulty connecting with others.
"At the most severe end of the spectrum, yes, that's true," said Marion. "But there is a multitude of children who have friends, and even some who do have close relationships."
Myth: Autistic individuals are a danger to society.
"It is a disservice to think that all people with autism are dangerous," said Wagner.
The idea rises from numerous news stories of individuals diagnosed with Asperger's syndrome, a high form of autism, who have been accused of burglary and, at times, murder.
However, if you look at the entire population of people on the autism spectrum, the number of people involved in crime is small, said Wagner. If someone with autism were to act out, it may be due to frustration or perhaps physical or emotional overstimulation, not necessarily malice, she said.
REFERENCE POINTS: Health Resources for Transitioning Youth
THE 2008 FACT SHEET ON HEALTH CARE ACCESS AND UTILIZATION: ADOLESCENTS AND YOUTH ADULTS This fact sheet contains the most recent available data on health insurance coverage, preventive and other health services, and unmet need among adolescents and young adults ages 12-24, including those with special health care needs. The fact sheet, produced by the National Adolescent Health Information Center at the University of California, San Francisco, with support from the Maternal and Child Health Bureau, highlights trends and presents data by age, gender, income level, and race and ethnicity. . The fact sheet is available at . http://nahic.ucsf.edu//downloads/HCAU2008.pdf A list of other NAHIC-produced briefs and fact sheets is available at http://nahic.ucsf.edu/index.php/data/article/briefs_fact_sheets
From: Monday Morning in Washington, DC
HEALTH COVERAGE IN COMMUNITIES OF COLOR: TALKING ABOUT THE CENSUS NUMBERS From Families USA, this 4-page document provides context to recent Census data. Although the numbers of uninsured declined between 2006 and 2007, the numbers are still considerably higher than in 2000. People and children of color remain more likely to lack health insurance than their non-Hispanic White peers. http://www.familiesusa.org/assets/pdfs/minority-health-and-the-census-numbers.pdf
TALKING WITH YOUR DOCTOR AND OTHER HEALTH CARE PROFESSIONALS
This 18 minute video is designed to teach adolescents and young adults (AYAs) how to communicate more effectively with health care providers so that professionals understand their concerns, answer their questions and provide the information and supports they need to be more in charge of their own health. This video was developed by the Institute for Child Health Policy. The video can be viewed at http://video.ichp.ufl.edu/twyd.php
THIS IS HEALTH CARE TRANSITION
Developed by the Institute for Child Health Policy at the University of FL, this video is intended to help youth and young adults with chronic health conditions and their families be better prepared for adulthood, especially the move from pediatric to adult-oriented health care. This video is available on the web at: http://video.ichp.ufl.edu/tihct.php ICHP has developed an online brochure that describes and provides access to all of their health care transition product and is available at: http://hctransitions.ichp.ufl.edu/hct-promo/
MY HEALTH, MY CHOICE, MY RESPONSIBILITY: A TRAINING PROGRAM ON HEALTH SELF-ADVOCACY
My Health, My Choice, My Responsibility is an 8-week training program written to promote health advocacy among adults with developmental disabilities. Each of its eight sessions covers a health area and focuses on making healthy decisions on a daily basis. The program also includes three tools designed to help participants take control of their health, including a tool for preparing for a medical appointment, record keeping of health needs and medical history, and a plan containing health goals that are developed over the course of the seminar. For more information go to http://www.wihd.org/matpub/matpub_index.html
From: the October 2008 NCPAD Monthly Newsletter
SINCE YOU'RE NOT A KID ANYMORE: IT'S TIME TO BE MORE IN CHARGE OF YOUR HEALTH CARE This 31 page booklet, also developed with funding from CMS, is a health care transition guide for teens in middle school. It includes information and activities designed to help young teens with special health care needs take a more active role in their own health care. It is available for download as a full color PDF document. The booklet is available, as a PDF at:
http://hctransitions.ichp.ufl.edu/pdfs/cms_synaka_lowres_07.pdf
From: Health Care Transition for Youth with Special Needs Digest [transition@mchenet.ichp.ufl.edu]
IT'S TIME TO TRANSITION! A WORKBOOK FOR YOUNG ADULTS, THEIR FAMILIES, AND THEIR MEDICAL PROVIDERS This workbook was developed to help organize the medical transition process into a smooth and successful move from pediatric focused to adult focused health care. The workbook is available on the web as a PDF at:http://www.cdphe.state.co.us/ps/hcp/transition/workbook.pdf
BUILD YOUR OWN CARE NOTEBOOK WEB SITE
A major role of a care notebook is to help parents/caregivers maintain an ongoing record of their child's care, services, providers, and notes. This notebook is a great tool in empowering families to become the experts on their child's care. It is also a way to maintain the lines of communication between the many providers and services that help care for a child and their family and can serve as a helpful tool for transitioning youth. For more information, go to http://www.medicalhomeinfo.org/tools/care_notebook.html
From: Monday Morning in Washington, DC
HEALTH COVERAGE IN COMMUNITIES OF COLOR: TALKING ABOUT THE CENSUS NUMBERS From Families USA, this 4-page document provides context to recent Census data. Although the numbers of uninsured declined between 2006 and 2007, the numbers are still considerably higher than in 2000. People and children of color remain more likely to lack health insurance than their non-Hispanic White peers. http://www.familiesusa.org/assets/pdfs/minority-health-and-the-census-numbers.pdf
TALKING WITH YOUR DOCTOR AND OTHER HEALTH CARE PROFESSIONALS
This 18 minute video is designed to teach adolescents and young adults (AYAs) how to communicate more effectively with health care providers so that professionals understand their concerns, answer their questions and provide the information and supports they need to be more in charge of their own health. This video was developed by the Institute for Child Health Policy. The video can be viewed at http://video.ichp.ufl.edu/twyd.php
THIS IS HEALTH CARE TRANSITION
Developed by the Institute for Child Health Policy at the University of FL, this video is intended to help youth and young adults with chronic health conditions and their families be better prepared for adulthood, especially the move from pediatric to adult-oriented health care. This video is available on the web at: http://video.ichp.ufl.edu/tihct.php ICHP has developed an online brochure that describes and provides access to all of their health care transition product and is available at: http://hctransitions.ichp.ufl.edu/hct-promo/
MY HEALTH, MY CHOICE, MY RESPONSIBILITY: A TRAINING PROGRAM ON HEALTH SELF-ADVOCACY
My Health, My Choice, My Responsibility is an 8-week training program written to promote health advocacy among adults with developmental disabilities. Each of its eight sessions covers a health area and focuses on making healthy decisions on a daily basis. The program also includes three tools designed to help participants take control of their health, including a tool for preparing for a medical appointment, record keeping of health needs and medical history, and a plan containing health goals that are developed over the course of the seminar. For more information go to http://www.wihd.org/matpub/matpub_index.html
From: the October 2008 NCPAD Monthly Newsletter
SINCE YOU'RE NOT A KID ANYMORE: IT'S TIME TO BE MORE IN CHARGE OF YOUR HEALTH CARE This 31 page booklet, also developed with funding from CMS, is a health care transition guide for teens in middle school. It includes information and activities designed to help young teens with special health care needs take a more active role in their own health care. It is available for download as a full color PDF document. The booklet is available, as a PDF at:
http://hctransitions.ichp.ufl.edu/pdfs/cms_synaka_lowres_07.pdf
From: Health Care Transition for Youth with Special Needs Digest [transition@mchenet.ichp.ufl.edu]
IT'S TIME TO TRANSITION! A WORKBOOK FOR YOUNG ADULTS, THEIR FAMILIES, AND THEIR MEDICAL PROVIDERS This workbook was developed to help organize the medical transition process into a smooth and successful move from pediatric focused to adult focused health care. The workbook is available on the web as a PDF at:http://www.cdphe.state.co.us/ps/hcp/transition/workbook.pdf
BUILD YOUR OWN CARE NOTEBOOK WEB SITE
A major role of a care notebook is to help parents/caregivers maintain an ongoing record of their child's care, services, providers, and notes. This notebook is a great tool in empowering families to become the experts on their child's care. It is also a way to maintain the lines of communication between the many providers and services that help care for a child and their family and can serve as a helpful tool for transitioning youth. For more information, go to http://www.medicalhomeinfo.org/tools/care_notebook.html
Friday, October 24, 2008
Reaching an Autistic Teenager
Reaching an Autistic Teenager
By MELISSA FAY GREENE
Published: October 17, 2008
On a typical Monday morning at an atypical high school, teenage boys yanked open the glass doors to the First Baptist Church of Decatur, Ga. Half-awake, iPod wires curling from their ears, their backpacks unbuckled and their jeans baggy, the guys headed for the elevator. Arriving at Morning Meeting in the third-floor conference room, Stephen, his face hidden under long black bangs, dropped into a chair, sprawled across the table and went back to sleep. The Community School, or T.C.S., is a small private school for teenage boys with autism or related disorders. Sleep disturbances are common in this student body of 10, so a boy’s staggering need for sleep is respected. Nick Boswell, a tall fellow with thick sideburns, arrived and began his usual pacing along the windows that overlook the church parking lot and baseball diamond. Edwick, with spiky brown hair and a few black whiskers, tumbled backward with a splat into a beanbag chair on the floor.
“O.K., guys, let’s talk about your spring schedules,” said Dave Nelson, the 45-year-old founding director. He wore a green polo shirt, cargo shorts and sneakers and had a buzz haircut and an open, suntanned face. After his son Graham, 19, was given a diagnosis of autism spectrum disorder (A.S.D.) as a young child, Nelson left the business world and went into teaching and clinical and counseling work. On that Monday, he was instantly interrupted.
“I had a very bad night!” Edwick yelled from the floor. “Nightmares all night!”
“What was disturbing you, Edwick?” Nelson asked.
“What do you think?” Edwick cried in exasperation. “It’s St. Patrick’s Day!”
“What’s upsetting about that?” Nelson asked.
Edwick dropped his shoulders to relay how tiring it was to have to explain every little thing. “Leprechauns,” he yelled.
“Oh,” Nelson said. “I thought maybe it was the tornado that hit downtown on Friday night.”
“No, not the tornado!” Edwick yelled.
Nick stopped pacing to comment: “Edwick’s not scared of tornados; he’s scared of leprechauns.” I burst out laughing and so did the faculty members, while Nelson seemed to relish the interruption rather than find it a hindrance to the morning routine. His hidden agenda was precisely to entertain outbursts like Edwick’s, while making room for a sardonic intelligence like Nick’s. No matter the stated purpose of Morning Meeting, the true purposes were always the same: conversation, debate, negotiation, compromise and the building of relationships. T.C.S.’s only serious admissions requirements are that a boy should have at least some functional language and that there’s a good chance he can become part of the “community” of the school name.
The group turned to registering for spring classes. In addition to biology, algebra 2/trigonometry, English literature and U.S. history, there were the electives: Dragon Lore, Comic Books, How to Shop for Bargains and the History of Snack Food. Past electives included All About Pirates, Spy Technology, Ping-Pong, Dog Obedience, Breaking World Records, Unusual Foods and Taking Things Apart. (“I just wish they’d come up with a second-quarter class, Putting the Things Back Together,” Nelson told me.)
“I knew it!” Edwick complained, mashing about on the beanbag chair. He was disappointed because no one picked the elective he’d proposed: the History of Meat.
What makes the Community School unusual is not its student body — plenty of schools around the country enroll teenagers with an autism spectrum disorder. But, like about only two dozen schools in the country, it employs a relatively new, creative and highly interactive teaching method known as D.I.R./Floortime, which is producing striking results among T.C.S.’s student body. (D.I.R. stands for developmental, individual differences, relationship-based approach.) The method is derived from the work of Stanley Greenspan, a child psychiatrist and professor of psychiatry, behavioral science and pediatrics at George Washington University, and his colleague Dr. Serena Wieder. D.I.R./Floortime can be effective with all kinds of children, whether they have developmental challenges or not. As applied by T.C.S., it is an approach that encourages students to develop their strengths and interests by working closely with one another and with their teachers. The goal for students is neurological progress through real-world engagement.
With the skyrocketing diagnoses of A.S.D.’s in recent years, parents and school systems are challenged as never before to find techniques to keep these teenagers engaged, productive and nondespairing. Boys with A.S.D. (they outnumber girls four to one) who were difficult to console, to teach, to restrain at age 4 or 8 can be nearly impossible for parents and teachers to manage and to steer at 14 and 18. While a 25-pound toddler’s tantrum is wearying, a 150-pound teenager’s tantrum is dangerous. Puberty and young adulthood take many of these young people unawares.
How best to serve this population remains a subject of debate, because autism is a “final common pathway” diagnosis, meaning children arrive here from different points of origin, are troubled by a wide variety of issues and respond to different strategies. “You meet one child with autism and, well, you’ve met one child with autism,” says Linda Brandenburg, the director of school autism services at the Kennedy Krieger Institute in Maryland. Given the wide range of expression in autism and related disorders, there is no one-size-fits-all intervention. “We now know that there are several different models that seem to work — some more behavioral, some more developmental, some more eclectic,” Dr. Fred R. Volkmar, director of the Yale Child Study Center, told me. “What we really need to be doing, what the law says, is design programs around the kids rather than force kids into a program.”
The vast majority of programs for autistic youth in the U.S. use an approach called Applied Behavior Analysis, in which teachers and therapists use well-established techniques of reward and punishment to shape a student’s actions toward goals like toilet training, learning vocabulary or completing a puzzle. A typical A.B.A. lesson rewards memorized responses, specific behaviors and compliance to external directives — “Pick up the fork, Jared.” An instructor may move the child’s arm, hand and fingers to model the desired behavior. The child is then rewarded — with praise, with hugs, with a treat — when he performs the act correctly. As the first method to work with profoundly self-absorbed children and to demonstrate that progress could be made, A.B.A. — which came to national prominence in the late 1980s — has been a lifesaver for countless families. Critics worry that the method focuses on modifying the symptoms rather than addressing the underlying disabilities, and many say they fear that A.B.A.-trained children often do not “generalize,” that is, take a behavior learned in one setting and apply it in another. A child may learn to make eye contact in response to “How are you?” and to reply, “Fine, how are you?” But such rote memorization does not give the child the intuition to know when a stranger is to be greeted warmly and when to be avoided, and it does not enable him to meet his grandmother with greater warmth than the grocer.
“All teachers and therapists use elements of behaviorism,” Nelson told me. “As an intervention for autism, the A.B.A. movement was one of the first to suggest how intensive the intervention has to be — maybe 40 hours a week — to see results. This notion of intensity has been valuable to everyone that followed.”
The Community School — with a teaching staff of 12 and a $25,000 tuition — employs the intensity but not the methodology of A.B.A. Rather than spend time on a student’s mastery of a skill preselected for him by an adult, the idea is to harness a student’s energy and desire to learn. As a student interacts with peers and teachers, solves problems and expresses his ideas, his behavior should naturally begin to lose its rough edges. The essence of Floortime is that a person learns best when self-motivated, when an inner drive sparks the acquisition of skills and knowledge.
As with A.B.A., achieving D.I.R./Floortime’s far-reaching goals for students requires intense interaction — a wooing of a child from his or her remove — for as many hours of the day as parents and teachers can physically sustain. Dr. Greenspan would like to see an autistic child productively interacting with an adult for most of his waking time, seven days a week. Those drained parents who have the means hire therapists and trained baby sitters to help them approximate that schedule, during either home-schooling days or out-of-school hours.
Because the goal of D.I.R./Floortime is the kindling of a student’s curiosity, intelligence, playfulness and energy, the lessons can take on a spontaneous, electric quality. I have seen sessions with young children during which the child and his or her therapist or parent tumbled across the house, behind the sofa, into closets or onto the porch, picking up balls, puppets, costumes, books and snacks along the way. At T.C.S., classes can look like debates between equals; school days can include board games, sports, plays, science experiments, music, art, ropes courses or rafting trips in which all students and teachers playfully compete, contribute and perform. All the boys at the school probably have average or better intelligence. Onlookers might call a few “high functioning” (though that adjective has no clinical meaning), and T.C.S. is an accredited high school and middle school, offering college prep and high-school courses to students able to complete a conventionally rigorous course of study. (Other students pursue less-demanding tracks oriented toward getting a G.E.D., attaining job skills or developing independent-living skills.) So it’s not all fun and social time. But rote learning is never the goal; the goal is that the students should be able to think, to feel, to communicate and to learn. Most of the kids are making the first friends of their lives here.
T.C.S. does not promise miracles. It does not promise to be a perfect fit for every teenager with an A.S.D. Dave Nelson does not invest great faith in the possibility of leaving the autism spectrum behind, no matter how much parents (like himself) would love to believe it. The breakthroughs at T.C.S. are subtle rather than headline-grabbing, noticeable at first only to the adults closest to the kids and to the students themselves. But for these families, any forward motion can inspire a moment of real hope and happiness, and quite remarkable progress happens every day.
Stephen, 17, a solidly built boy with a sweet face under a heavy thatch of bangs, entered T.C.S. in 2005 prone to blowups of alarming power. His parents adore their son and have been whipped about like sailboats by his furies. His first year at school, during group construction of an outdoor marble-run, a boy fumbled and a marble dropped. “I am going to assassinate him,” Stephen exploded. “I. Will. Behead. Him.” Stephen’s academics are top-notch, but the stance of the Community School is not to ignore a student’s psychological deficits while skipping ahead to schoolwork or life skills. It doesn’t matter that Stephen is at home with algebraic theorems if he is going to react like a toddler when ambushed by a mad or sad feeling.
Ty Martin, 14, is a cute and curly-haired guy who lives in terror of loud or strange noises. The faux thunderstorm in the produce aisles at the grocery store makes it difficult to take him shopping. A classmate’s coughing or a siren in the distance distracts him from schoolwork. His mother often was obliged to retreat to a windowless basement room at home, hugging and soothing her son when the outside world — especially lawn crews next door with leaf-blowers — overwhelmed him. “He doesn’t like crows,” Judy Martin told me last spring. “If crows are at a park, he’ll go from happy to berserk in five seconds. If we go to a restaurant, we’re all on edge, praying the bartender doesn’t turn on the blender.”
Sam Gross visited San Francisco with his mother two years ago at age 15. During a tour of Alcatraz, the handsome olive-skinned boy climbed a nearby fence and prepared to dive. Had his mother not spotted him and screamed, Sam would have been injured or killed by falling onto the rocks. But he was not trying to kill himself. He planned, as he explained in his monotone voice, to turn into a merman and swim back to the mainland.
Then he began to deteriorate. For two years, he spent every day in a ball under his blankets, rising only to pound either side of his head with such ferocity that two bald spots bloomed under his fists, then dangerously swelled. He had to be sedated to stop the self-battery. By the time Sam reached the Community School, he was nearly incommunicative. Whenever he began using his head like a punching bag, the teachers asked him to stop, and he did, but otherwise showed no sign that he heard them.
Students arrive at T.C.S. trailing long histories of school failure and humiliation, suspension, expulsion, truncated transcripts, social isolation, victimization, self-loathing, suicidal ideation or years of home-schooling patched together by mothers forced to leave their jobs. “On our first visit with Dave Nelson, Ty started screaming: ‘I hate this place! I want to leave right now!’ ” Judy Martin says. “Most principals don’t want to work with a kid like that. But what I saw on Dave Nelson’s face was ‘I can work with a kid like this.’ ”
Many prospective parents begin to weep during their intake interviews with Nelson. For them and their children, this place represents something of a last chance.
While there is no direct relationship between Dr. Stanley Greenspan and the nation’s D.I.R./Floortime schools, other than one of mutual respect, the theoretical underpinning of these schools relies on his argument that human intelligence itself is constructed out of the warm back-and-forth signaling between child and parent, beginning at birth. Jean Piaget located a child’s investigation of causality in the material world, for example, with experiments like pulling a string attached to a bell, but Greenspan and his colleague Serena Wieder see these insights occurring in the emotional realm, when a baby learns that his or her smile brings the parent’s smile. Brain development is not a solo pursuit but a rich and complex flowering that occurs only in the hothouse of human relationships.
What does this have to do with autism? A child born at risk of an A.S.D. has cognitive and sensitivity issues that inhibit engagement. Pleasures enjoyed by a typical baby can upset him: a mother’s face seems too close, so the infant cranes away; the father’s tickles may produce fear reflexes rather than laughter. Meanwhile the sunlight is burning his eyes, the diaper scrapes his skin and the baby begins avoiding interaction with people at the cost of normal brain development.
I begin to picture the brain metaphorically as a tangled ball of Christmas lights. When you plug it in, there are strands that light up perfectly and there are dark zones where a single burned-out bulb has caused a line to go out. If the bulb for Exchanging-Smiles-With-Mother doesn’t light up, then Empathy won’t be kindled farther along the strand, or Playfulness, or Theory of Mind (the insight that other people have different thoughts from yours). The electrical current won’t reach the social-skill set, the communication skills, creativity, humor or abstract thinking.
According to the D.I.R. perspective, emotion is the power source that lights up the neural switchboard. D.I.R./Floortime’s goal is to connect autistic students with other people as a way of fueling their cognitive potential and giving them access to their own feelings, desires and insights. The latest findings in the field of neuroplasticity support D.I.R.’s faith in the capacity of the human brain to recoup and to compensate for injury and illness. “Early intervention is optimal,” Dr. Greenspan told me, “but it’s never too late. The areas of the brain that regulate emotions, that sequence ideas and actions and that influence abstract thinking keep growing into a person’s 50s and 60s.”
T.C.S. students are masters of withdrawal, and for the D.I.R. model to work, each student must be an active partner in his own education. But how do you ignite the enthusiasm of an autistic teenager who has long since walled himself off from the outside world; who uses little language or who screeches in random yelps or vulgarities; who flips out when pried away from his computer game; who speaks to you, if at all, in long monologues on arcane subjects with zero interest in your response? What do you use as a staging ground for a relationship with an increasingly furious and despairing adolescent?
The Floortime technique might be summed up as: “Follow the child’s lead and challenge the child.” It is most easily visible on the videotapes documenting Dr. Greenspan’s 25 years of clinical work with younger children. In each video, the gangly psychiatrist crouches on the floor of his comfortably shabby home office in Bethesda, calling instructions to parents about how to catch the attention of and interact with their remote-seeming children. “I treat everything the child does as having a reason — to feel calmer, for example, or to feel excited,” Dr. Greenspan told me. “Often the parents have notions of what the child should be doing, so they’re trying to control the child rather than build on the child’s natural interests.”
In my favorite video, a 30-something husband and wife flank their 4-year-old daughter; the husband, in round horn-rim glasses, sits forward on the sofa; his wife curls up on the floor nearby. Their daughter, with chopped-off blond hair and a doughy face, looks to me like Helen Keller, pre-Anne Sullivan. Seeming almost blind, deaf, mute and mentally retarded, she bounces from sofa to table to wall. She is without affect, her movements ungainly and her eyes unfocused. She makes slurping sounds, as if she has reached the bottom of a drink with a straw. “We’re going to try to get a continuous flow of back-and-forth going here,” Dr. Greenspan says.
The mother smiles sadly, knowingly. “That would be nice,” she says.
“We’re going to build on what she does,” the doctor says.
The girl is flapping a plastic toy in her hand. “Will she give it to Daddy?” Dr. Greenspan asks.
“Can I see that?” the father asks as the child roams the room. The child seems not to hear him. But then the girl, traveling by, indifferently drops the toy into his outstretched hand. Delighted, the father says: “There’s a star on it! And there’s a triangle!”
“Here you’re losing her, Daddy,” Dr. Greenspan says, and sure enough, the girl escapes and heads for a wall. “If you’re trying to educate her with complicated language that she’s not processing, then you’re going to lose her. You want to change your orientation from educating her to interacting with her.”
The child picks up a bright plastic flowered eyeglass case off a table and twiddles it. “See if she’ll give it to you,” the doctor prompts.
“Can you give it to Mommy?” the mother asks, and surprising everyone, the girl hands it over. “Thank you!” the mother says.
The mother hides the eyeglass case behind her on the floor. The girl treads in place for a moment, swinging her arms and slurping. She begins to laugh a strange, heaving laugh. “Huh-huh-huh!” The mother moves a little to show that she’s sitting on the eyeglass case, and the child dives for it.
“Good, good!” Dr. Greenspan cheers.
“Can I have it back?” the mother asks. The mother hides it inside her own sweater, half-exposed.
“Let her get it! Let her get it! Let her get it!” Dr. Greenspan says in excitement. It is of paramount importance to him that the child initiates her own ideas and motor plans. Every time her parents start to physically turn or steer her, he stops them, crying: “Let her do it! Let her do it!”
The mother next slips the eyeglass case into the bib of her daughter’s pink overalls, and the girl stops in her tracks. Dr. Greenspan is prepared to leap over furniture to block the parents from giving her a clue. Suddenly, slowly, the girl’s gaze drops. . . . She finds the eyeglass case! In her own pants! “Ooh! Ooh! Ooh! Ooh!” she says.
“Make it more complicated!” the psychiatrist pleads.
“Can we go give it to Daddy?” the mother asks.
The mother walks over to the father, who hides the eyeglass case in his shirt. The girl freezes in confusion. The psychiatrist loves a moment like this and tries to prolong it. He sees momentary frustration as a vitally creative occasion. He urges parents to be “playfully obstructive.” He’s not after results; he wants to see a child thinking. “She can do this,” he advises them.
The girl slowly looks down, plucking at her overalls. For a moment it seems they have lost her. But — no — she’s looking inside the bib, where she last found the eyeglass case. It’s not there. Again she freezes. She must be thinking, “Mommy went to Daddy. . . . ” Slowly she turns toward her father.
The expression on the father’s face, when his daughter plucks the eyeglass case from his shirt, is of heartbreaking gratitude. A moment later, he pitches the eyeglass case over her head to his wife. The girl turns and beholds her beaming mother holding the eyeglass case. “Ooh! Ooh! Ooh!” she says. Mom pitches the case back to Dad, and when the child turns to run to her father, she skips in her delight, her face radiant, making a hoarse sound of laughter.
Children with autism — especially Asperger’s — are famous for all-consuming interests in Matchbox cars, bus maps, train schedules, oscillating fans, Civil War battles, baseball statistics, black holes, dinosaurs, chess or Star Wars. While most programs try to discourage these obsessions, D.I.R./Floortime argues that they can offer openings into relationships. Does this work? Parents of T.C.S. students say that it does. Most speak in glowing terms about the school’s lifesaving impact on their families. Outside experts are more cautious, reluctant to give any one approach a gold medal when there are so many variables, including the profiles of the students admitted to T.C.S. in the first place. “Stanley Greenspan is an engaged and enthusiastic clinician,” Dr. Volkmar says. “People are attracted to Floortime because it is respectful of the child and the child’s wishes. He wants to follow the child’s lead. I would imagine that more able children do produce leads that are worth following — I’ve seen kids with Asperger’s do well in Montessori programs too — but what if the child isn’t doing much that you’d want to follow? I wonder if following the lead of a child who’s doing nothing but body rocking results in a roomful of people all body rocking with him.”
Dave Nelson says: “T.C.S. is a school, so I’d argue that our success should be measured by how well we educate our students. The boys have far better attendance rates than at their previous schools. They have far better emotional regulation — many could not attend school before due to their outbursts; while here, emotional regulation is core curriculum. Many were depressed to the point of suicidal ideation at their previous schools; that’s not happening here. Some were victims of bullying, some were aggressors at their previous schools; not here. All our parents report that their children are functioning better, are happier and are better communicators, thinkers and learners.”
Judy Martin says: “My son Ty’s progress has been monumental. He doesn’t cry in dark basements anymore. He isn’t entirely focused on himself; he is learning real empathy. He never liked school, and now he loves it. Every day this past summer he asked me when he could be with Dave Nelson. This is a child who never cared about teachers or friends. Now he tells me he loves them. I chatted with Stephen the other day by the vending machine as his money got stuck. He was problem-solving rather than blowing up. We rode the elevator together, chatting about the problem, while he decided to go find a teacher to help him.”
One morning at school, the fire alarm went off. My first thought — like everyone’s — was, Oh, my God —Ty! We descended the stairs to the parking lot. Ty was within a circle of T.C.S. teachers. “It was Elana!” he yelled to everyone about one of the teachers, who had been trying to prepare a snack for her class. “Elana burnt the popcorn in the microwave!” Poor Elana Himmelfarb, covering her face, not knowing whether to laugh or cry, said again and again, “I am just so, so, so, so sorry, Ty.”
He was trying to forgive her, but he kept asking, “Elana, why did you make the fire alarm go off?” His face was red, his curls were plastered back with perspiration and he was rocking a bit, long after the alarm had been silenced. Back upstairs, when the smoke cleared, Ty huddled in a beanbag chair with Rebecca Richter, one of the teachers, beside him.
“I hate that noise,” Ty said. “That’s a bad noise. That has a witch’s voice.”
“You really didn’t like that noise,” she agreed.
“This can NEVER HAPPEN AGAIN,” he sobbed, demanding that Rebecca promise him. “This will never happen again, will it? This can never happen!
“I need you to call my mom,” he said, weeping. “I’m having a very bad day. Will you call my mom? I need her to come get me.” I imagine a region of Ty’s brain blinking hard, a fistful of tiny red lights setting one another off: Panic! Panic!
“If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” Nelson told me later. “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.”
Gently Richter moved Ty from unreality (“the witch’s voice”) onto solid ground (“I’m having a bad day”). Given the tools to hang on, Ty survived until the end of the school day. And the breakthroughs continued. “When Ty came home that day, we talked through the events, as the school has trained me to lovingly do,” Judy Martin told me recently, “and Ty said, ‘Mom, I feel bad for Elana, because she didn’t mean to do it.’
“ ‘Do you think she felt embarrassed?’ I asked him, and he said yes. This moment was huge: Ty has always struggled with seeing the viewpoint of others, and here he was able to take a moment that frightened him and look at it from Elana’s viewpoint. We go to restaurants all the time now, and Ty couldn’t care less about the blenders. Lawn crews arrive next door, and they don’t faze him.”
When Sam Gross, now 17, arrived at T.C.S., he tripped along down the hall on the balls of his feet, rolling his head, thrumming on his chest with his fingers, humming to himself, lost in other worlds. The only points of entry he offered were during serious flights of fancy. “What this school needs,” he murmured in his low, resonant voice one day to a teacher, Lucie Canfield, “is a magic cabinet.”
“What would it do, Sam?” Lucie asked, delighted.
After a long pause he said, “Turn Sam into Samantha.” Sam wanted to travel back in time, he explained, to when he was a little girl; then he changed his mind and wanted to use it for teleporting.
Sam’s parents and his psychiatrist were initially less than enthusiastic about the magic cabinet: “Let’s not get started with this stuff here,” they said. But Lucie had already asked Sam, “What would a magic cabinet look like?”
Sam had replied: “Cow-colored.”
Lucie pushed poster board and colored pencils at Sam and said, “Show me.”
Dave Nelson agreed. This was the clearest opening they’d had from Sam Gross. Everything Nelson knew about Floortime told him to follow the boy’s lead. “Let’s see where this goes,” he told Sam’s parents.
Sam finished several quite beautiful drawings of a tall, rectangular closet. It would have a blue curtain and a bell stand on top, with a chain he would pull when he was finished transforming or teleporting. Nelson brought in a refrigerator box, and Lucie and Sam painted it in a nice Holstein pattern of black on white. “We made a point of always saying to Sam not that we were building a magic cabinet, but that we would pretend with him,” Lucie tells me. “I explained that magicians used tricks to make people think they disappeared.” T.C.S. would facilitate this exploration, with Sam, of the frontier of fantasy, with the expectation that he would encounter some reality along the way.
The special day arrived, and Sam stepped into the cabinet and drew the curtain. Dave waved a magic wand and read words Sam had written: “Abracadabra-a-whirl. Let Sam turn into a girl.”
There was silence inside the box. Then Sam called, “Do it again!” Dave chanted the words again. Silence. Then: “Let Lucie do it!” The teacher took the wand and gave it a try.
Sam peeked out, still male. “This is not the right cabinet for turning into a girl,” he said in consternation. “This is the cabinet that turns you into Paul McCartney.” He exited. At home that night, Sam looked up magicians in the Yellow Pages and booked one to come to school the next day. Dave Nelson canceled. It was time for reality to intervene.
Back at school, Sam spent the week focusing on how to teleport out of the cabinet to surprise folks in the cafeteria on the ground floor. Then one day he made an unusual request of Lucie Canfield: he needed help cutting a back door in the box that would allow him to slip away like a stage magician. It was a striking and brave acknowledgment of the material world.
Sam never staged his trick, as it was real magic that excited him. And he muttered, over the next few weeks, seditious thoughts along the lines of, What kind of school is this that doesn’t provide a real magician? The Magic Cabinet still stands in the art room, bell-towered and cow-colored. Many of the students enjoy stepping behind the blue curtain now and then for a moment of quiet remove from the world or to prepare to burst back upon the room in an assumed role. “It’s expanded from a product of Sam’s fantastic imagination to something of real purpose,” Judy Martin told me. “Kids peek out their heads as characters from books they’ve been reading, changing their voices and facial expressions.” The Magic Cabinet has come to stand for what the Community School offers these students: the possibility of transformation.
Melissa Fay Greene is the author of “There Is No Me Without You: One Woman’s Odyssey to Rescue Her Country’s Children.”
A version of this article appears in print on October 19, 2008, on page MM32 of the New York edition.
By MELISSA FAY GREENE
Published: October 17, 2008
On a typical Monday morning at an atypical high school, teenage boys yanked open the glass doors to the First Baptist Church of Decatur, Ga. Half-awake, iPod wires curling from their ears, their backpacks unbuckled and their jeans baggy, the guys headed for the elevator. Arriving at Morning Meeting in the third-floor conference room, Stephen, his face hidden under long black bangs, dropped into a chair, sprawled across the table and went back to sleep. The Community School, or T.C.S., is a small private school for teenage boys with autism or related disorders. Sleep disturbances are common in this student body of 10, so a boy’s staggering need for sleep is respected. Nick Boswell, a tall fellow with thick sideburns, arrived and began his usual pacing along the windows that overlook the church parking lot and baseball diamond. Edwick, with spiky brown hair and a few black whiskers, tumbled backward with a splat into a beanbag chair on the floor.
“O.K., guys, let’s talk about your spring schedules,” said Dave Nelson, the 45-year-old founding director. He wore a green polo shirt, cargo shorts and sneakers and had a buzz haircut and an open, suntanned face. After his son Graham, 19, was given a diagnosis of autism spectrum disorder (A.S.D.) as a young child, Nelson left the business world and went into teaching and clinical and counseling work. On that Monday, he was instantly interrupted.
“I had a very bad night!” Edwick yelled from the floor. “Nightmares all night!”
“What was disturbing you, Edwick?” Nelson asked.
“What do you think?” Edwick cried in exasperation. “It’s St. Patrick’s Day!”
“What’s upsetting about that?” Nelson asked.
Edwick dropped his shoulders to relay how tiring it was to have to explain every little thing. “Leprechauns,” he yelled.
“Oh,” Nelson said. “I thought maybe it was the tornado that hit downtown on Friday night.”
“No, not the tornado!” Edwick yelled.
Nick stopped pacing to comment: “Edwick’s not scared of tornados; he’s scared of leprechauns.” I burst out laughing and so did the faculty members, while Nelson seemed to relish the interruption rather than find it a hindrance to the morning routine. His hidden agenda was precisely to entertain outbursts like Edwick’s, while making room for a sardonic intelligence like Nick’s. No matter the stated purpose of Morning Meeting, the true purposes were always the same: conversation, debate, negotiation, compromise and the building of relationships. T.C.S.’s only serious admissions requirements are that a boy should have at least some functional language and that there’s a good chance he can become part of the “community” of the school name.
The group turned to registering for spring classes. In addition to biology, algebra 2/trigonometry, English literature and U.S. history, there were the electives: Dragon Lore, Comic Books, How to Shop for Bargains and the History of Snack Food. Past electives included All About Pirates, Spy Technology, Ping-Pong, Dog Obedience, Breaking World Records, Unusual Foods and Taking Things Apart. (“I just wish they’d come up with a second-quarter class, Putting the Things Back Together,” Nelson told me.)
“I knew it!” Edwick complained, mashing about on the beanbag chair. He was disappointed because no one picked the elective he’d proposed: the History of Meat.
What makes the Community School unusual is not its student body — plenty of schools around the country enroll teenagers with an autism spectrum disorder. But, like about only two dozen schools in the country, it employs a relatively new, creative and highly interactive teaching method known as D.I.R./Floortime, which is producing striking results among T.C.S.’s student body. (D.I.R. stands for developmental, individual differences, relationship-based approach.) The method is derived from the work of Stanley Greenspan, a child psychiatrist and professor of psychiatry, behavioral science and pediatrics at George Washington University, and his colleague Dr. Serena Wieder. D.I.R./Floortime can be effective with all kinds of children, whether they have developmental challenges or not. As applied by T.C.S., it is an approach that encourages students to develop their strengths and interests by working closely with one another and with their teachers. The goal for students is neurological progress through real-world engagement.
With the skyrocketing diagnoses of A.S.D.’s in recent years, parents and school systems are challenged as never before to find techniques to keep these teenagers engaged, productive and nondespairing. Boys with A.S.D. (they outnumber girls four to one) who were difficult to console, to teach, to restrain at age 4 or 8 can be nearly impossible for parents and teachers to manage and to steer at 14 and 18. While a 25-pound toddler’s tantrum is wearying, a 150-pound teenager’s tantrum is dangerous. Puberty and young adulthood take many of these young people unawares.
How best to serve this population remains a subject of debate, because autism is a “final common pathway” diagnosis, meaning children arrive here from different points of origin, are troubled by a wide variety of issues and respond to different strategies. “You meet one child with autism and, well, you’ve met one child with autism,” says Linda Brandenburg, the director of school autism services at the Kennedy Krieger Institute in Maryland. Given the wide range of expression in autism and related disorders, there is no one-size-fits-all intervention. “We now know that there are several different models that seem to work — some more behavioral, some more developmental, some more eclectic,” Dr. Fred R. Volkmar, director of the Yale Child Study Center, told me. “What we really need to be doing, what the law says, is design programs around the kids rather than force kids into a program.”
The vast majority of programs for autistic youth in the U.S. use an approach called Applied Behavior Analysis, in which teachers and therapists use well-established techniques of reward and punishment to shape a student’s actions toward goals like toilet training, learning vocabulary or completing a puzzle. A typical A.B.A. lesson rewards memorized responses, specific behaviors and compliance to external directives — “Pick up the fork, Jared.” An instructor may move the child’s arm, hand and fingers to model the desired behavior. The child is then rewarded — with praise, with hugs, with a treat — when he performs the act correctly. As the first method to work with profoundly self-absorbed children and to demonstrate that progress could be made, A.B.A. — which came to national prominence in the late 1980s — has been a lifesaver for countless families. Critics worry that the method focuses on modifying the symptoms rather than addressing the underlying disabilities, and many say they fear that A.B.A.-trained children often do not “generalize,” that is, take a behavior learned in one setting and apply it in another. A child may learn to make eye contact in response to “How are you?” and to reply, “Fine, how are you?” But such rote memorization does not give the child the intuition to know when a stranger is to be greeted warmly and when to be avoided, and it does not enable him to meet his grandmother with greater warmth than the grocer.
“All teachers and therapists use elements of behaviorism,” Nelson told me. “As an intervention for autism, the A.B.A. movement was one of the first to suggest how intensive the intervention has to be — maybe 40 hours a week — to see results. This notion of intensity has been valuable to everyone that followed.”
The Community School — with a teaching staff of 12 and a $25,000 tuition — employs the intensity but not the methodology of A.B.A. Rather than spend time on a student’s mastery of a skill preselected for him by an adult, the idea is to harness a student’s energy and desire to learn. As a student interacts with peers and teachers, solves problems and expresses his ideas, his behavior should naturally begin to lose its rough edges. The essence of Floortime is that a person learns best when self-motivated, when an inner drive sparks the acquisition of skills and knowledge.
As with A.B.A., achieving D.I.R./Floortime’s far-reaching goals for students requires intense interaction — a wooing of a child from his or her remove — for as many hours of the day as parents and teachers can physically sustain. Dr. Greenspan would like to see an autistic child productively interacting with an adult for most of his waking time, seven days a week. Those drained parents who have the means hire therapists and trained baby sitters to help them approximate that schedule, during either home-schooling days or out-of-school hours.
Because the goal of D.I.R./Floortime is the kindling of a student’s curiosity, intelligence, playfulness and energy, the lessons can take on a spontaneous, electric quality. I have seen sessions with young children during which the child and his or her therapist or parent tumbled across the house, behind the sofa, into closets or onto the porch, picking up balls, puppets, costumes, books and snacks along the way. At T.C.S., classes can look like debates between equals; school days can include board games, sports, plays, science experiments, music, art, ropes courses or rafting trips in which all students and teachers playfully compete, contribute and perform. All the boys at the school probably have average or better intelligence. Onlookers might call a few “high functioning” (though that adjective has no clinical meaning), and T.C.S. is an accredited high school and middle school, offering college prep and high-school courses to students able to complete a conventionally rigorous course of study. (Other students pursue less-demanding tracks oriented toward getting a G.E.D., attaining job skills or developing independent-living skills.) So it’s not all fun and social time. But rote learning is never the goal; the goal is that the students should be able to think, to feel, to communicate and to learn. Most of the kids are making the first friends of their lives here.
T.C.S. does not promise miracles. It does not promise to be a perfect fit for every teenager with an A.S.D. Dave Nelson does not invest great faith in the possibility of leaving the autism spectrum behind, no matter how much parents (like himself) would love to believe it. The breakthroughs at T.C.S. are subtle rather than headline-grabbing, noticeable at first only to the adults closest to the kids and to the students themselves. But for these families, any forward motion can inspire a moment of real hope and happiness, and quite remarkable progress happens every day.
Stephen, 17, a solidly built boy with a sweet face under a heavy thatch of bangs, entered T.C.S. in 2005 prone to blowups of alarming power. His parents adore their son and have been whipped about like sailboats by his furies. His first year at school, during group construction of an outdoor marble-run, a boy fumbled and a marble dropped. “I am going to assassinate him,” Stephen exploded. “I. Will. Behead. Him.” Stephen’s academics are top-notch, but the stance of the Community School is not to ignore a student’s psychological deficits while skipping ahead to schoolwork or life skills. It doesn’t matter that Stephen is at home with algebraic theorems if he is going to react like a toddler when ambushed by a mad or sad feeling.
Ty Martin, 14, is a cute and curly-haired guy who lives in terror of loud or strange noises. The faux thunderstorm in the produce aisles at the grocery store makes it difficult to take him shopping. A classmate’s coughing or a siren in the distance distracts him from schoolwork. His mother often was obliged to retreat to a windowless basement room at home, hugging and soothing her son when the outside world — especially lawn crews next door with leaf-blowers — overwhelmed him. “He doesn’t like crows,” Judy Martin told me last spring. “If crows are at a park, he’ll go from happy to berserk in five seconds. If we go to a restaurant, we’re all on edge, praying the bartender doesn’t turn on the blender.”
Sam Gross visited San Francisco with his mother two years ago at age 15. During a tour of Alcatraz, the handsome olive-skinned boy climbed a nearby fence and prepared to dive. Had his mother not spotted him and screamed, Sam would have been injured or killed by falling onto the rocks. But he was not trying to kill himself. He planned, as he explained in his monotone voice, to turn into a merman and swim back to the mainland.
Then he began to deteriorate. For two years, he spent every day in a ball under his blankets, rising only to pound either side of his head with such ferocity that two bald spots bloomed under his fists, then dangerously swelled. He had to be sedated to stop the self-battery. By the time Sam reached the Community School, he was nearly incommunicative. Whenever he began using his head like a punching bag, the teachers asked him to stop, and he did, but otherwise showed no sign that he heard them.
Students arrive at T.C.S. trailing long histories of school failure and humiliation, suspension, expulsion, truncated transcripts, social isolation, victimization, self-loathing, suicidal ideation or years of home-schooling patched together by mothers forced to leave their jobs. “On our first visit with Dave Nelson, Ty started screaming: ‘I hate this place! I want to leave right now!’ ” Judy Martin says. “Most principals don’t want to work with a kid like that. But what I saw on Dave Nelson’s face was ‘I can work with a kid like this.’ ”
Many prospective parents begin to weep during their intake interviews with Nelson. For them and their children, this place represents something of a last chance.
While there is no direct relationship between Dr. Stanley Greenspan and the nation’s D.I.R./Floortime schools, other than one of mutual respect, the theoretical underpinning of these schools relies on his argument that human intelligence itself is constructed out of the warm back-and-forth signaling between child and parent, beginning at birth. Jean Piaget located a child’s investigation of causality in the material world, for example, with experiments like pulling a string attached to a bell, but Greenspan and his colleague Serena Wieder see these insights occurring in the emotional realm, when a baby learns that his or her smile brings the parent’s smile. Brain development is not a solo pursuit but a rich and complex flowering that occurs only in the hothouse of human relationships.
What does this have to do with autism? A child born at risk of an A.S.D. has cognitive and sensitivity issues that inhibit engagement. Pleasures enjoyed by a typical baby can upset him: a mother’s face seems too close, so the infant cranes away; the father’s tickles may produce fear reflexes rather than laughter. Meanwhile the sunlight is burning his eyes, the diaper scrapes his skin and the baby begins avoiding interaction with people at the cost of normal brain development.
I begin to picture the brain metaphorically as a tangled ball of Christmas lights. When you plug it in, there are strands that light up perfectly and there are dark zones where a single burned-out bulb has caused a line to go out. If the bulb for Exchanging-Smiles-With-Mother doesn’t light up, then Empathy won’t be kindled farther along the strand, or Playfulness, or Theory of Mind (the insight that other people have different thoughts from yours). The electrical current won’t reach the social-skill set, the communication skills, creativity, humor or abstract thinking.
According to the D.I.R. perspective, emotion is the power source that lights up the neural switchboard. D.I.R./Floortime’s goal is to connect autistic students with other people as a way of fueling their cognitive potential and giving them access to their own feelings, desires and insights. The latest findings in the field of neuroplasticity support D.I.R.’s faith in the capacity of the human brain to recoup and to compensate for injury and illness. “Early intervention is optimal,” Dr. Greenspan told me, “but it’s never too late. The areas of the brain that regulate emotions, that sequence ideas and actions and that influence abstract thinking keep growing into a person’s 50s and 60s.”
T.C.S. students are masters of withdrawal, and for the D.I.R. model to work, each student must be an active partner in his own education. But how do you ignite the enthusiasm of an autistic teenager who has long since walled himself off from the outside world; who uses little language or who screeches in random yelps or vulgarities; who flips out when pried away from his computer game; who speaks to you, if at all, in long monologues on arcane subjects with zero interest in your response? What do you use as a staging ground for a relationship with an increasingly furious and despairing adolescent?
The Floortime technique might be summed up as: “Follow the child’s lead and challenge the child.” It is most easily visible on the videotapes documenting Dr. Greenspan’s 25 years of clinical work with younger children. In each video, the gangly psychiatrist crouches on the floor of his comfortably shabby home office in Bethesda, calling instructions to parents about how to catch the attention of and interact with their remote-seeming children. “I treat everything the child does as having a reason — to feel calmer, for example, or to feel excited,” Dr. Greenspan told me. “Often the parents have notions of what the child should be doing, so they’re trying to control the child rather than build on the child’s natural interests.”
In my favorite video, a 30-something husband and wife flank their 4-year-old daughter; the husband, in round horn-rim glasses, sits forward on the sofa; his wife curls up on the floor nearby. Their daughter, with chopped-off blond hair and a doughy face, looks to me like Helen Keller, pre-Anne Sullivan. Seeming almost blind, deaf, mute and mentally retarded, she bounces from sofa to table to wall. She is without affect, her movements ungainly and her eyes unfocused. She makes slurping sounds, as if she has reached the bottom of a drink with a straw. “We’re going to try to get a continuous flow of back-and-forth going here,” Dr. Greenspan says.
The mother smiles sadly, knowingly. “That would be nice,” she says.
“We’re going to build on what she does,” the doctor says.
The girl is flapping a plastic toy in her hand. “Will she give it to Daddy?” Dr. Greenspan asks.
“Can I see that?” the father asks as the child roams the room. The child seems not to hear him. But then the girl, traveling by, indifferently drops the toy into his outstretched hand. Delighted, the father says: “There’s a star on it! And there’s a triangle!”
“Here you’re losing her, Daddy,” Dr. Greenspan says, and sure enough, the girl escapes and heads for a wall. “If you’re trying to educate her with complicated language that she’s not processing, then you’re going to lose her. You want to change your orientation from educating her to interacting with her.”
The child picks up a bright plastic flowered eyeglass case off a table and twiddles it. “See if she’ll give it to you,” the doctor prompts.
“Can you give it to Mommy?” the mother asks, and surprising everyone, the girl hands it over. “Thank you!” the mother says.
The mother hides the eyeglass case behind her on the floor. The girl treads in place for a moment, swinging her arms and slurping. She begins to laugh a strange, heaving laugh. “Huh-huh-huh!” The mother moves a little to show that she’s sitting on the eyeglass case, and the child dives for it.
“Good, good!” Dr. Greenspan cheers.
“Can I have it back?” the mother asks. The mother hides it inside her own sweater, half-exposed.
“Let her get it! Let her get it! Let her get it!” Dr. Greenspan says in excitement. It is of paramount importance to him that the child initiates her own ideas and motor plans. Every time her parents start to physically turn or steer her, he stops them, crying: “Let her do it! Let her do it!”
The mother next slips the eyeglass case into the bib of her daughter’s pink overalls, and the girl stops in her tracks. Dr. Greenspan is prepared to leap over furniture to block the parents from giving her a clue. Suddenly, slowly, the girl’s gaze drops. . . . She finds the eyeglass case! In her own pants! “Ooh! Ooh! Ooh! Ooh!” she says.
“Make it more complicated!” the psychiatrist pleads.
“Can we go give it to Daddy?” the mother asks.
The mother walks over to the father, who hides the eyeglass case in his shirt. The girl freezes in confusion. The psychiatrist loves a moment like this and tries to prolong it. He sees momentary frustration as a vitally creative occasion. He urges parents to be “playfully obstructive.” He’s not after results; he wants to see a child thinking. “She can do this,” he advises them.
The girl slowly looks down, plucking at her overalls. For a moment it seems they have lost her. But — no — she’s looking inside the bib, where she last found the eyeglass case. It’s not there. Again she freezes. She must be thinking, “Mommy went to Daddy. . . . ” Slowly she turns toward her father.
The expression on the father’s face, when his daughter plucks the eyeglass case from his shirt, is of heartbreaking gratitude. A moment later, he pitches the eyeglass case over her head to his wife. The girl turns and beholds her beaming mother holding the eyeglass case. “Ooh! Ooh! Ooh!” she says. Mom pitches the case back to Dad, and when the child turns to run to her father, she skips in her delight, her face radiant, making a hoarse sound of laughter.
Children with autism — especially Asperger’s — are famous for all-consuming interests in Matchbox cars, bus maps, train schedules, oscillating fans, Civil War battles, baseball statistics, black holes, dinosaurs, chess or Star Wars. While most programs try to discourage these obsessions, D.I.R./Floortime argues that they can offer openings into relationships. Does this work? Parents of T.C.S. students say that it does. Most speak in glowing terms about the school’s lifesaving impact on their families. Outside experts are more cautious, reluctant to give any one approach a gold medal when there are so many variables, including the profiles of the students admitted to T.C.S. in the first place. “Stanley Greenspan is an engaged and enthusiastic clinician,” Dr. Volkmar says. “People are attracted to Floortime because it is respectful of the child and the child’s wishes. He wants to follow the child’s lead. I would imagine that more able children do produce leads that are worth following — I’ve seen kids with Asperger’s do well in Montessori programs too — but what if the child isn’t doing much that you’d want to follow? I wonder if following the lead of a child who’s doing nothing but body rocking results in a roomful of people all body rocking with him.”
Dave Nelson says: “T.C.S. is a school, so I’d argue that our success should be measured by how well we educate our students. The boys have far better attendance rates than at their previous schools. They have far better emotional regulation — many could not attend school before due to their outbursts; while here, emotional regulation is core curriculum. Many were depressed to the point of suicidal ideation at their previous schools; that’s not happening here. Some were victims of bullying, some were aggressors at their previous schools; not here. All our parents report that their children are functioning better, are happier and are better communicators, thinkers and learners.”
Judy Martin says: “My son Ty’s progress has been monumental. He doesn’t cry in dark basements anymore. He isn’t entirely focused on himself; he is learning real empathy. He never liked school, and now he loves it. Every day this past summer he asked me when he could be with Dave Nelson. This is a child who never cared about teachers or friends. Now he tells me he loves them. I chatted with Stephen the other day by the vending machine as his money got stuck. He was problem-solving rather than blowing up. We rode the elevator together, chatting about the problem, while he decided to go find a teacher to help him.”
One morning at school, the fire alarm went off. My first thought — like everyone’s — was, Oh, my God —Ty! We descended the stairs to the parking lot. Ty was within a circle of T.C.S. teachers. “It was Elana!” he yelled to everyone about one of the teachers, who had been trying to prepare a snack for her class. “Elana burnt the popcorn in the microwave!” Poor Elana Himmelfarb, covering her face, not knowing whether to laugh or cry, said again and again, “I am just so, so, so, so sorry, Ty.”
He was trying to forgive her, but he kept asking, “Elana, why did you make the fire alarm go off?” His face was red, his curls were plastered back with perspiration and he was rocking a bit, long after the alarm had been silenced. Back upstairs, when the smoke cleared, Ty huddled in a beanbag chair with Rebecca Richter, one of the teachers, beside him.
“I hate that noise,” Ty said. “That’s a bad noise. That has a witch’s voice.”
“You really didn’t like that noise,” she agreed.
“This can NEVER HAPPEN AGAIN,” he sobbed, demanding that Rebecca promise him. “This will never happen again, will it? This can never happen!
“I need you to call my mom,” he said, weeping. “I’m having a very bad day. Will you call my mom? I need her to come get me.” I imagine a region of Ty’s brain blinking hard, a fistful of tiny red lights setting one another off: Panic! Panic!
“If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” Nelson told me later. “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.”
Gently Richter moved Ty from unreality (“the witch’s voice”) onto solid ground (“I’m having a bad day”). Given the tools to hang on, Ty survived until the end of the school day. And the breakthroughs continued. “When Ty came home that day, we talked through the events, as the school has trained me to lovingly do,” Judy Martin told me recently, “and Ty said, ‘Mom, I feel bad for Elana, because she didn’t mean to do it.’
“ ‘Do you think she felt embarrassed?’ I asked him, and he said yes. This moment was huge: Ty has always struggled with seeing the viewpoint of others, and here he was able to take a moment that frightened him and look at it from Elana’s viewpoint. We go to restaurants all the time now, and Ty couldn’t care less about the blenders. Lawn crews arrive next door, and they don’t faze him.”
When Sam Gross, now 17, arrived at T.C.S., he tripped along down the hall on the balls of his feet, rolling his head, thrumming on his chest with his fingers, humming to himself, lost in other worlds. The only points of entry he offered were during serious flights of fancy. “What this school needs,” he murmured in his low, resonant voice one day to a teacher, Lucie Canfield, “is a magic cabinet.”
“What would it do, Sam?” Lucie asked, delighted.
After a long pause he said, “Turn Sam into Samantha.” Sam wanted to travel back in time, he explained, to when he was a little girl; then he changed his mind and wanted to use it for teleporting.
Sam’s parents and his psychiatrist were initially less than enthusiastic about the magic cabinet: “Let’s not get started with this stuff here,” they said. But Lucie had already asked Sam, “What would a magic cabinet look like?”
Sam had replied: “Cow-colored.”
Lucie pushed poster board and colored pencils at Sam and said, “Show me.”
Dave Nelson agreed. This was the clearest opening they’d had from Sam Gross. Everything Nelson knew about Floortime told him to follow the boy’s lead. “Let’s see where this goes,” he told Sam’s parents.
Sam finished several quite beautiful drawings of a tall, rectangular closet. It would have a blue curtain and a bell stand on top, with a chain he would pull when he was finished transforming or teleporting. Nelson brought in a refrigerator box, and Lucie and Sam painted it in a nice Holstein pattern of black on white. “We made a point of always saying to Sam not that we were building a magic cabinet, but that we would pretend with him,” Lucie tells me. “I explained that magicians used tricks to make people think they disappeared.” T.C.S. would facilitate this exploration, with Sam, of the frontier of fantasy, with the expectation that he would encounter some reality along the way.
The special day arrived, and Sam stepped into the cabinet and drew the curtain. Dave waved a magic wand and read words Sam had written: “Abracadabra-a-whirl. Let Sam turn into a girl.”
There was silence inside the box. Then Sam called, “Do it again!” Dave chanted the words again. Silence. Then: “Let Lucie do it!” The teacher took the wand and gave it a try.
Sam peeked out, still male. “This is not the right cabinet for turning into a girl,” he said in consternation. “This is the cabinet that turns you into Paul McCartney.” He exited. At home that night, Sam looked up magicians in the Yellow Pages and booked one to come to school the next day. Dave Nelson canceled. It was time for reality to intervene.
Back at school, Sam spent the week focusing on how to teleport out of the cabinet to surprise folks in the cafeteria on the ground floor. Then one day he made an unusual request of Lucie Canfield: he needed help cutting a back door in the box that would allow him to slip away like a stage magician. It was a striking and brave acknowledgment of the material world.
Sam never staged his trick, as it was real magic that excited him. And he muttered, over the next few weeks, seditious thoughts along the lines of, What kind of school is this that doesn’t provide a real magician? The Magic Cabinet still stands in the art room, bell-towered and cow-colored. Many of the students enjoy stepping behind the blue curtain now and then for a moment of quiet remove from the world or to prepare to burst back upon the room in an assumed role. “It’s expanded from a product of Sam’s fantastic imagination to something of real purpose,” Judy Martin told me. “Kids peek out their heads as characters from books they’ve been reading, changing their voices and facial expressions.” The Magic Cabinet has come to stand for what the Community School offers these students: the possibility of transformation.
Melissa Fay Greene is the author of “There Is No Me Without You: One Woman’s Odyssey to Rescue Her Country’s Children.”
A version of this article appears in print on October 19, 2008, on page MM32 of the New York edition.
Thursday, October 2, 2008
EMPATHY IN THE CLASSROOM
EMPATHY IN THE CLASSROOM
By Dan Coulter
Let me tell you about the worst "teacher" I ever had.
He was a salesman standing in for a trainer who'd gotten ill. He'd come to our company's location to teach a roomful of us to use a complicated, computer controlled, multi-projector slide show system. This salesman made a classic teaching mistake. He assumed that because something he worked with every day was easy for him to understand, it should be easy for others to pick up. He rattled off information about the system in machine-gun fashion. When he repeatedly asked us if we understood something and various class members said, "No," he impatiently snapped his fingers at us and barked, "Keep up, keep up!"
Some students got disgusted and left the class at the break. Others stuck it out, but learned little.
The salesman's failure was based on his inability to put himself in someone else's place, understand things from that person's point of view, and communicate information in a way, and at a pace, the person can absorb it.
Successful teachers either know these steps instinctively or learn them from experience.
Now it's time to throw you a curve. This article is not about teachers.
It's about classmates of students who have Asperger Syndrome, High Functioning Autism or similar Autism Spectrum Disorders (ASDs).
Classmates can't be expected to have the instincts or experience of teachers. Many classmates are impatient with or dismissive of students who exhibit different or difficult behaviors due to ASDs, without ever knowing the reasons for those behaviors. It doesn't seem fair to simply get angry with these classmates, if they've never been given an explanation or been instructed how to interact with students who think and act differently.
There are no guarantees that educating students about ASDs is going to make all classmates more empathetic. But time after time, we've seen classmates who get that information become more understanding, accommodating and supportive. Especially if they're given the opportunity to mentally put themselves in the place of a student with an ASD and see things from his or her point of view. This helps them understand the reasons for impulsive behaviors, or seemingly tactless remarks, or sensitivities to light or sound or touch. Also, an important part of any such presentation is helping classmates become aware of students' strengths as well as their challenges.
And you don't have to single out a child on the spectrum or disclose a specific disability to hold a class lesson or school assembly about understanding students who think and act differently. While we've generally found that disclosing specific ASDs to classmates is helpful, that's a decision to be made by an individual student and his or her family.
If you're a teacher who has a student with an ASD in your class, consulting with parents and school staff and holding an education session about autism spectrum conditions can help integrate that student into your class and teach classmates valuable life lessons about tolerance, empathy and communication at the same time.
You don't want your students growing up to be the salesman who doesn't bother to read his audience and fails miserably to communicate.
Imagine your students looking back on your class gratefully as they succeed in business and life using the approach to understanding and reaching people
that you've fostered.
As they enter an increasingly complex, multi-cultural, global workplace, yours could be a class they'll never forget. I hope someday you get letters, telling you just that.
ABOUT THE AUTHOR: Dan Coulter is the producer of the Intricate Minds series of DVDs that help classmates understand Asperger Syndrome and other Autism Spectrum Disorders. You can find more information on his website at:
www.coultervideo.com.
Copyright 2008 Dan Coulter All Rights Reserved.
By Dan Coulter
Let me tell you about the worst "teacher" I ever had.
He was a salesman standing in for a trainer who'd gotten ill. He'd come to our company's location to teach a roomful of us to use a complicated, computer controlled, multi-projector slide show system. This salesman made a classic teaching mistake. He assumed that because something he worked with every day was easy for him to understand, it should be easy for others to pick up. He rattled off information about the system in machine-gun fashion. When he repeatedly asked us if we understood something and various class members said, "No," he impatiently snapped his fingers at us and barked, "Keep up, keep up!"
Some students got disgusted and left the class at the break. Others stuck it out, but learned little.
The salesman's failure was based on his inability to put himself in someone else's place, understand things from that person's point of view, and communicate information in a way, and at a pace, the person can absorb it.
Successful teachers either know these steps instinctively or learn them from experience.
Now it's time to throw you a curve. This article is not about teachers.
It's about classmates of students who have Asperger Syndrome, High Functioning Autism or similar Autism Spectrum Disorders (ASDs).
Classmates can't be expected to have the instincts or experience of teachers. Many classmates are impatient with or dismissive of students who exhibit different or difficult behaviors due to ASDs, without ever knowing the reasons for those behaviors. It doesn't seem fair to simply get angry with these classmates, if they've never been given an explanation or been instructed how to interact with students who think and act differently.
There are no guarantees that educating students about ASDs is going to make all classmates more empathetic. But time after time, we've seen classmates who get that information become more understanding, accommodating and supportive. Especially if they're given the opportunity to mentally put themselves in the place of a student with an ASD and see things from his or her point of view. This helps them understand the reasons for impulsive behaviors, or seemingly tactless remarks, or sensitivities to light or sound or touch. Also, an important part of any such presentation is helping classmates become aware of students' strengths as well as their challenges.
And you don't have to single out a child on the spectrum or disclose a specific disability to hold a class lesson or school assembly about understanding students who think and act differently. While we've generally found that disclosing specific ASDs to classmates is helpful, that's a decision to be made by an individual student and his or her family.
If you're a teacher who has a student with an ASD in your class, consulting with parents and school staff and holding an education session about autism spectrum conditions can help integrate that student into your class and teach classmates valuable life lessons about tolerance, empathy and communication at the same time.
You don't want your students growing up to be the salesman who doesn't bother to read his audience and fails miserably to communicate.
Imagine your students looking back on your class gratefully as they succeed in business and life using the approach to understanding and reaching people
that you've fostered.
As they enter an increasingly complex, multi-cultural, global workplace, yours could be a class they'll never forget. I hope someday you get letters, telling you just that.
ABOUT THE AUTHOR: Dan Coulter is the producer of the Intricate Minds series of DVDs that help classmates understand Asperger Syndrome and other Autism Spectrum Disorders. You can find more information on his website at:
www.coultervideo.com.
Copyright 2008 Dan Coulter All Rights Reserved.
ADAAA Becomes Law, Strengthens 504 & ADA
Today, the ADA Amendments Act (ADAAA), S.3406, was signed into law. The ADAAA overturns a decade of jurisprudence that has barred the door to ADA eligibility for many people with disabilities, including epilepsy, diabetes, intellectual and developmental disabilities, muscular dystrophy, and cancer, among many others. The reforms in the law will apply to both the ADA and Section 504 of the Rehabilitation Act. The reforms will restore the intent of the bipartisan Congress that passed the ADA in 1990. At the same time, the bill is a compromise, as much legislation is. As you know, COPAA has worked in support of this important bill. The ADAAA will take effect in January 2009. COPAA will be providing more information about the ADAAA and its impact on Section 504 in the near future. We thank Senators Harkin and Hatch, and HELP Chair Senator Kennedy and Ranking Member Senator Enzi for their leadership. We also thank the many members of Congress who supported the bill, and the broad coalition of disability and employer groups who worked so hard for its passage.
Below are more details on the ADAAA for those who are interested.
It is important to understand that the ADA and Section 504 define disability in a similar way, and therefore, ADA case law is applicable to 504 cases. Because the harmful ADA cases were also applicable to 504, the reforms apply to both laws. These reforms include the following highlights.
First, the ADAAA overturns in large part the Supreme Court's decision in Sutton v. United Airlines, which held that people with disabilities were not eligible under the ADA if their conditions could be mitigated by medication, assistive technology and equipment, or learned behavioral adaptations. The law also overturns Sutton's holding that a disability must limit more than one major life activity. Moreover, the bill will clarify that major life activities include working, communicating, concentrating, thinking, reading, and other activities of central importance. Although Sutton arose in the ADA context, its holding was equally applicable to 504 cases, and thus, the override is made applicable to 504..
When Congress passed the ADA in 1990, it intended to protect people whose disabilities 'substantially' limit them from performing major life activities. But the Supreme Court in Toyota v. Williams interpreted this term very narrowly and turned into a barrier to ADA eligibility, requiring that the person be severely restricted in his/her ability to perform major life activities. The Equal Employment Opportunity Commission similarly defined the term as 'significantly restricted.' Again, although Toyota was an ADA case, its holding was also applicable to 504. The ADAAA overrides Toyota for both the ADA and 504. It states in its findings that the Supreme Court in Toyota, and the EEOC in its regulations, set the standard too high by defining 'substantially limited' to require that the restriction be 'significant,' or 'severe.' The Senate bill will thus restore the standard Congress intendedhat the impairment simply be a substantial limitation. This finding is particularly important and we will be giving more guidance about it in the future. The ADAAA further states that the ADA must be interpreted to give full force and effect to these findings.
The ADAAA Statement of Senate Managers explains what 'substantially limited' means, emphasizing the same language that Congress used in 1990:
A person is considered an individual with a disability for purposes of the first prong of the definition when [one or more of] the individual's important life activities are restricted as to the conditions, manner, or duration under which they can be performed in comparison to most people. A person who can walk for 10 miles continuously is not substantially limited in walking merely because on the eleventh mile, he or she begins to experience pain because most people would not be able to walk eleven miles without experiencing some discomfort.
In addition to these reforms, the ADAAA removes from ADA's 'regarded as' prong of the disability definition the requirement that an individual demonstrate that he or she has, or is perceived to have, an impairment that substantially limits a major life activity. There are other reforms in the bill, as well.
Like the House legislative history, the Senate legislative history makes clear merely because someone with a specific learning disability can perform well academically does not mean that he/she may not also be substantially limited in the major life activities of learning, reading, writing, thinking, and speaking. Of course, the person would still need to establish that he/she was substantially limited in this manner and that he/she needed reasonable accommodations. The legislative history also makes clear that the 11th Circuit in Littleton v. Wal-Mart Stores, Inc. was incorrect to decide that a person with mental retardation was not disabled because he could drive a car and communicate with words.
Importantly for children with disabilities, the ADAAA applies equally to 504. Unlike the situation with employment, most school districts appropriately applied the law to 504 eligibility questions, and accommodated a range of students with disabilities. Thus, the ADAAA will not make any substantial changes in what most districts already do. But the law provides an important remedy for those children who have inappropriately been denied 504 eligibility. COPAA had received reports of some school districts denying 504 eligiblity to children with diabetes, life-threatening food allergies, learning disabilities, ADHD, Aspergers Syndrome, and other disabilities. For example, one school district argued that because a 6yo with a life-threatening nut allergy could care for himself about as well as other 6yos, and because he could breathe just fine when not suffering from anaphylaxis, he wasn't substantially limited and didn't have a disability under 504. Other 504 situations involved children with disabilities who are unable to obtain 504 plans with appropriate behavioral supports and access to appropriately challenging school work.
In the ADAAA, Congress made clear that no child should have the door to 504 shut because of old, outdated ADA case law that a bipartisan consensus agreed should be changed. The ADA aspects of the ADAAA are also increasingly relevant as youth with disabilities transition from school into the world of employment. The ADAAA is a bipartisan law that represents a significant achievement in protecting the rights of children and adults with disabilities. Again, it will be effective in January 2009. Thus, if in January 2009, a child would be entitled to reasonable accommodations under 504, even though he previously was not because of a mitigating measure or he was not considered 'substantially limited,' the law will protect him. Further information about the law will be provided later and we are sure many organizations will be providing information.
Council of Parent Attorneys and Advocates, Inc. (COPAA), 2008.
Below are more details on the ADAAA for those who are interested.
It is important to understand that the ADA and Section 504 define disability in a similar way, and therefore, ADA case law is applicable to 504 cases. Because the harmful ADA cases were also applicable to 504, the reforms apply to both laws. These reforms include the following highlights.
First, the ADAAA overturns in large part the Supreme Court's decision in Sutton v. United Airlines, which held that people with disabilities were not eligible under the ADA if their conditions could be mitigated by medication, assistive technology and equipment, or learned behavioral adaptations. The law also overturns Sutton's holding that a disability must limit more than one major life activity. Moreover, the bill will clarify that major life activities include working, communicating, concentrating, thinking, reading, and other activities of central importance. Although Sutton arose in the ADA context, its holding was equally applicable to 504 cases, and thus, the override is made applicable to 504..
When Congress passed the ADA in 1990, it intended to protect people whose disabilities 'substantially' limit them from performing major life activities. But the Supreme Court in Toyota v. Williams interpreted this term very narrowly and turned into a barrier to ADA eligibility, requiring that the person be severely restricted in his/her ability to perform major life activities. The Equal Employment Opportunity Commission similarly defined the term as 'significantly restricted.' Again, although Toyota was an ADA case, its holding was also applicable to 504. The ADAAA overrides Toyota for both the ADA and 504. It states in its findings that the Supreme Court in Toyota, and the EEOC in its regulations, set the standard too high by defining 'substantially limited' to require that the restriction be 'significant,' or 'severe.' The Senate bill will thus restore the standard Congress intendedhat the impairment simply be a substantial limitation. This finding is particularly important and we will be giving more guidance about it in the future. The ADAAA further states that the ADA must be interpreted to give full force and effect to these findings.
The ADAAA Statement of Senate Managers explains what 'substantially limited' means, emphasizing the same language that Congress used in 1990:
A person is considered an individual with a disability for purposes of the first prong of the definition when [one or more of] the individual's important life activities are restricted as to the conditions, manner, or duration under which they can be performed in comparison to most people. A person who can walk for 10 miles continuously is not substantially limited in walking merely because on the eleventh mile, he or she begins to experience pain because most people would not be able to walk eleven miles without experiencing some discomfort.
In addition to these reforms, the ADAAA removes from ADA's 'regarded as' prong of the disability definition the requirement that an individual demonstrate that he or she has, or is perceived to have, an impairment that substantially limits a major life activity. There are other reforms in the bill, as well.
Like the House legislative history, the Senate legislative history makes clear merely because someone with a specific learning disability can perform well academically does not mean that he/she may not also be substantially limited in the major life activities of learning, reading, writing, thinking, and speaking. Of course, the person would still need to establish that he/she was substantially limited in this manner and that he/she needed reasonable accommodations. The legislative history also makes clear that the 11th Circuit in Littleton v. Wal-Mart Stores, Inc. was incorrect to decide that a person with mental retardation was not disabled because he could drive a car and communicate with words.
Importantly for children with disabilities, the ADAAA applies equally to 504. Unlike the situation with employment, most school districts appropriately applied the law to 504 eligibility questions, and accommodated a range of students with disabilities. Thus, the ADAAA will not make any substantial changes in what most districts already do. But the law provides an important remedy for those children who have inappropriately been denied 504 eligibility. COPAA had received reports of some school districts denying 504 eligiblity to children with diabetes, life-threatening food allergies, learning disabilities, ADHD, Aspergers Syndrome, and other disabilities. For example, one school district argued that because a 6yo with a life-threatening nut allergy could care for himself about as well as other 6yos, and because he could breathe just fine when not suffering from anaphylaxis, he wasn't substantially limited and didn't have a disability under 504. Other 504 situations involved children with disabilities who are unable to obtain 504 plans with appropriate behavioral supports and access to appropriately challenging school work.
In the ADAAA, Congress made clear that no child should have the door to 504 shut because of old, outdated ADA case law that a bipartisan consensus agreed should be changed. The ADA aspects of the ADAAA are also increasingly relevant as youth with disabilities transition from school into the world of employment. The ADAAA is a bipartisan law that represents a significant achievement in protecting the rights of children and adults with disabilities. Again, it will be effective in January 2009. Thus, if in January 2009, a child would be entitled to reasonable accommodations under 504, even though he previously was not because of a mitigating measure or he was not considered 'substantially limited,' the law will protect him. Further information about the law will be provided later and we are sure many organizations will be providing information.
Council of Parent Attorneys and Advocates, Inc. (COPAA), 2008.
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