NYU Online Town Hall: Psychiatric Ransom Notes

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Is there a link for the questions that WERE allowed? I think it would be good to compare what went through and what was left off.

Hundreds Turn Out for Online "Town Hall" on Child and Teen Mental Health

Thanks to all who participated in the NYU Child Study Center Online Town Hall Meeting on children's mental health!

A transcript of the meeting appears below.

We had a wonderful, overwhelming response and could not address every question during the meeting, but we will reply to all via email. Please be patient as we attend to individual questions in the coming weeks. Please note:If you submitted a question without registering or when not logged in, we do not have your e-mail address. Please submit your questions or comments to [email protected] for a response.

We are so encouraged by the turnout at the town hall meeting, as well as the thoughtful, inquisitive, and insightful comments and questions. The one thing demonstrated by all participants was caring and concern for children, and a desire to learn more and share ideas about how we can best support them.

Among the many changes that participants called for included: encouraging better understanding of psychiatric disorders and the children they affect; ending the stigma that these children and their parents feel; creating a greater public commitment to supporting mental health treatment, services and programs; and treating psychiatric disorders like physical illnesses -as real illnesses that can and should be treated in all children, and covered by insurance at a parity level with physical illness.

At the meeting, we truly saw a community that is committed to improving awareness and care for children's mental health. We look forward to working together to benefit the 15 million children and teenagers with psychiatric and learning disorders.

NYU Child Study Center
Town Hall Meeting on children's mental health

Tuesday, February 26, 2008
11:00 am to 1:00 pm (EST)
www.AboutOurKids.org

CSC Moderator: Welcome to the NYU Child Study Center's (CSC) Town Hall Meeting on children's mental health. Please join Harold S. Koplewicz, M.D., CSC founder and director, in this moderated forum to discuss what we can do together to improve awareness and care for children's mental health. Please note that this discussion is moderated, so your post will not show up immediately. If we are unable to post and address a question during the meeting (11:00 am to 1:00 pm EST), we will reply to the sender via e-mail. Comments are also welcome at [email protected].

CSC Moderator: Please note: This board will be opened at 11:00 am (EST). Comments submitted before then will not be received or posted. Also, please use the "PostReply" button to submit comments. Do not use the "Quick Reply" button, as your post may not be received.

Dr. Harold S. Koplewicz: Welcome everyone. I am so glad to open this town hall meeting at the NYU Child Study Center. We welcome questions and comments and look forward to working together to benefit the 15 million children and teenagers with psychiatric and learning disorders.

Anonymous: Hi, I am a concerned dad who lives in Westchester. How can we move forward to address the issue we are discussing today and make an actual change?

Dr. Harold S. Koplewicz: This forum is a first step, an opportunity to share ideas. We hope that it inspires people to take additional steps in their communities to make a difference.

mmwaldman: I've been a bit confused. I have a new diagnosis of Asperger's. I was under the impression that it was neurological. I see a psychiatrist, but as far as I know there is no treatment for Asperger's. How will children with Asperger's receive treatment?

Dr. Harold S. Koplewicz: Yes, Asperger Syndrome is a neurologically-based condition. Psychiatrists frequently and successfully treat children and adults with AS if they have symptoms that respond to medication. Psychologists and educators play a very large role in the treatment of AS in areas of social skill development, academic problems, and emotional responses to day-to-day problems. The fact that something is neurologically- based does not mean it's not a psychiatric disorder. The best example is schizophrenia; it's genetic, it has a neurological component, it has a biological basis, it's not caused by bad parenting, but it's psychiatric.

Dr. Harold S. Koplewicz: Part of the stigma of having a child with psychiatric disorder, is the fact that the word itself - psychiatric- implies blame. For many years, the public believed that children with ADHD were the product of bad parenting. We now know that children with ADHD have brain differences that are the root of their disorder, and that, if anything, they need super parenting, but that it's not bad parenting that gave them the psychiatric disorder.

aneeman: Often, disability - particularly some of the disabilities portrayed inaccurately by the Ransom Notes advertising campaign - is depicted as solely the province of children. In fact, one recent bestselling author of a book about her autistic child announced that she didn't believe that adults on the autism spectrum existed. Obviously, this presents a huge problem for awareness, acceptance and service-delivery. What will NYU do in its next ad campaign to ensure that adults with disabilities are represented?

Ari Ne'eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
autisticadvocacy.org
732.763.5530

Dr. Harold S. Koplewicz: Clearly, these disorders are life-long in nature. Nevertheless, the NYU Child Study Center is dedicated to a very under-served population of children and adolescents with psychiatric, developmental, and learning disorders. Adult outcomes can be significantly improved with the appropriate diagnosis and intervention in childhood.

CSC Moderator: Welcome to the NYU Child Study Center's (CSC) Town Hall Meeting on children's mental health. If we are unable to post and address a question during the meeting (11:00 am to 1:00 pm EST), we will reply to the sender via e-mail. Comments are also welcome at [email protected].

Sara: I think that teaching the larger community about Autism is a step forward for all autistics, Asperger's and classic autism alike. Our differences need to be understood, not cured or treated, in many cases.

Dr. Harold S. Koplewicz: If you're an adult with an autism spectrum disorder, the world needs to be much more understanding of your differences, understand the strengths that you bring, and help you find a place in the job and personal world. For children, it's very important that we give them the best start possible, and provide needed treatments at as young an age as possible so that they can succeed in school and in life. The more we learn from a research perspective about autism spectrum disorders, the more likely we are to develop successful treatments and interventions for individuals with autism.

Anonymous: Hello--I'm in Iowa. One of my concerns is that I see families receiving a diagnosis for a child depending on where they live. For example, Aspergers is a "popular" diagnosis where I live, and early onset bipolar is popular in another part of the state. Mental health practitioners wear certain goggles and tend to see children through these goggles. When do you think we will see a more uniform diagnosis process? Or will it always be subjective and fluid, simply b/c it's the nature of mental health?

Dr. Harold S. Koplewicz: Diagnosis of child and adolescent psychiatric disorders is essential. The most important thing that a clinician can do for a patient is to get the diagnosis right. Once you have a diagnosis, that is what will drive treatment and intervention, and sometimes will inform the patient and the family that no treatment is necessary. However, at the present time, there is a shortage of qualified child and adolescent mental health professionals. In addition, we need more research so that we can become more systematic in our diagnoses, and learn more about both the brain differences and the genetic influences that are specific for certain disorders. Unfortunately, at the present time, we do not have a blood test; but that doesn't mean that we can't make an accurate diagnosis by taking a comprehensive and complete history from parents and examining the child.

Dr. Harold S. Koplewicz: Every year we learn more about the brain and the differences that occur in children with specific disorders. The future is very promising for a better understanding and better treatment for child and adolescent psychiatric disorders.

laurena: As a parent and advocate, I like the approach NAMI (National Alliance for the Mentally Ill) uses regarding reducing stigma and understanding brain disorders if it's mental health, autism, Attention Deficit, etc. Basically it's like any other illness like heart disease but the organ affected just happens to be the brain. Also, using people first language helps. You'd never say someone "is" cancer but rather they "have" cancer. So it's better to say someone has mental illness or has autism etc. (not he is autistic) because the condition is not who they are but only part of who they are as people.

Dr. Harold S. Koplewicz: The NYU Child Study Center is dedicated to making sure the children and adolescents with brain disorders are able to fulfill their potential in life.

Anonymous: What is being done for teens with autism etc., with regard to preparing them for adulthood, independent living, etc? Do you currently have programs in place to help these children (and their parents) ease into adulthood? It's great how far we've come with early intervention and the school system, unfortunately, at 18 or 21, these individuals are essentially deserted, and often forgotten about.

Dr. Harold S. Koplewicz: Adult agencies are beginning to understand the specific needs of young adults on the autism spectrum and plan more specific job support for them but we are just in the infancy of understanding how to truly integrate individuals on the autism spectrum into the workforce. In preparation for adulthood, teens need to have a variety of work experiences, improve their social skills development and learn how to advocate for their own needs in the community. Professionals and parents need to ensure that these early steps are taken in preparation for adult life.

Anonymous: My 10 year old was recently diagnosed with ADHD Inattentive Type NYU and Beth Israel Neuropsychologists. My question is how can I help my daughter in this area and is this something that eventually gets corrected? She is now in the 4th grade and struggling a bit despite the accommodations the school has put in place for her. Any advice will help.

aspencer: It seems to me that one of the major obstacles to better services for children with psychiatric and learning disorders is fragmentation. First, there is often a lack of understanding that children with psychiatric disorders may have underlying learning difficulties. In addition, there are few opportunities for psychiatrists and other clinicians, educators and families to work together closely to address the child's progress and problems at home, at school and in the community. There are few existing linkages - certainly in terms of school-related issues.

Dr. Harold S. Koplewicz: ADD inattentive type can cause great difficulties for a 4th grade student. Inattentiveness and impulsivity make the demands of the classroom very challenging. In addition, often children with ADD inattentive type have comorbid anxiety. Medication is the first line of attack for ADD inattentive type. Carefully monitored, most kids do very well.

Dr. Harold S. Koplewicz: The NYU Child Study Center works with a multi-disciplinary approach -- educators, neuropsychologists, child and adolescent psychiatrists and pediatric neurologists work together to evaluate children and develop appropriate treatment plans. We have developed the Rosenberg lectures given monthly by both an educator and clinician to address how child psychiatric disorders affect school life. For more information on these lectures, please visit our website, www.AboutOurKids.org.

setlinger: Dr. Koplewicz, I am one of the parents quoted in the NY Times article on the campaign. I want to thank you for hosting this forum today and for rethinking your approach to awareness. I understand the need for early intervention (my son has been receiving services since age 2), but for many, treatment options are limited by financial resources, insurance and geography in addition to general awareness. Which of the many treatments for ASD available today do you feel are most promising, and do you have any insight into the future of insurance coverage for these treatments?

Dr. Harold S. Koplewicz: At the current time, we don't have a magic bullet. The best treatment for ASD is specifying interventions based on individual brain characteristics and manifestations of autism. It is critical to match children's individual needs to evidence-based treatments. Because autism is such a variable condition, different interventions are more effective than others for specific children. Neuropsychological assessment is our best tool for understanding individual differences.

Anonymous: As a parent of a child with mental health issues, I'd like to voice support for NAMI Texas' Visions for Tomorrow classes. They are free classes for parents and provide information and support. I know I feel so isolated and judged -- it helps to remember that I am not alone. For those of you who are not parents, try to think of mental health issues as brain disorders -- similar to diabetes, heart problems, etc. When my son was raging in the grocery store, no one stopped to offer help. If he had been having an asthma attack, for example, people would surely have stepped in to help. It's very lonely.

Dr. Harold S. Koplewicz: As far as insurance, there has never been a more promising time than today. Congressman Patrick Kennedy is taking the lead in the House of Representatives to develop a comprehensive mental health parity bill which will finally mandate that health insurance cover both psychiatric and physical illnesses.

Dr. Harold S. Koplewicz: I agree with you completely and also recommend that you tune in to Sirius Radio channel 114 in April to our About Our Kids radio program on Fridays from 8AM to 10AM EST.

Anonymous: It would be good, perhaps, to teach children about conditions like bulimia, depression, autism, in ways that state simply what they are, without overly emphasizing that it is "terrible" to have them. That's not to say that a person with (for instance) depression does not suffer or have difficulties. It's important to emphasize hope and help, rather than fear. Kristina Chew, Ph.D. autismvox.com

Dr. Harold S. Koplewicz: I agree with you. However, if we don't educate the public about outcomes of untreated psychiatric disorders, they tend to minimize the disorders; "she is just sad, snap out of it, he is a quirky kid, why give him accommodations, she is just a dizzy blonde, not a child with ADD."

Anonymous: If, as was mentioned, it takes super-parenting to parent a child with ADHD, or ASD, it is important that any awareness campaign honor that reality and not, as happened in the Ransom Notes campaign, imply that many of these children were not being adequately treated due to parental neglect or oversight, rather than due to systemic failure. The lack of accessible resources for many families is a reality that has to be recognized! It also needs to recognize that children's' behavior would not necessarily be good, or even better, if the children were receiving good treatment. Children receiving excellent care may still exhibit behaviors that some people find disturbing.

Dr. Harold S. Koplewicz: It has never been proven that psychiatric disorders are parents' fault. In 1996, I wrote a book published by Random House called It's Nobody's Fault: New Hope and Help for Difficult Children and Their Parents. Many people at the time disagreed with me and said that mothers caused depression and 20 years before, people told me that mothers caused autism. We certainly know that parents are not the cause of psychiatric disorders in children and adolescents. We firmly believe that the public does not understand that there is a system failure. There are insufficient mental health professionals, unacceptable health insurance coverage, and constant stigma about these disorders that allows our nation to permit this condition to exist. Without us joining together to insist upon mental health parity, increased NIMH funding for research in child psychiatric disorders, and for accommodations in school settings for children with diagnosable disorders, these children will be unable to live the lives that they are entitled to.

Dr. Harold S. Koplewicz: The goal of our public service campaign in the past and the one we're planning to launch in the Fall 2008 is to better educate the public about how real, how common, and how unaddressed these conditions are in children and adolescents.

Joseph Kras: Given how the previous ad campaign was felt by many to demean and further stigmatize those with various conditions, do you have any plans to include people with autism, ADHD, and other disorders before rolling out a new ad campaign?

Dr. Harold S. Koplewicz: This is the first step in getting information from all communities about what is necessary to help educate the public about child and adolescent mental health. During the next six months we will continue to gather information through our website, though our community outreach, with our partners at NAMI, CHADD, as well as with self advocacy groups.

Anonymous: I do not think the term "psychiatry" implies blame...I think it implies an attempt to understand.

Dr. Harold S. Koplewicz: I agree with you. Unfortunately, many people still feel that if something is psychiatric it implies fault and if it's neurological one is held blameless. We clearly know that both are biological in nature and require understanding, diagnosis and treatment.

Anonymous: Dr. K, What is on your list of "evidence-based treatments"?

Dr. Harold S. Koplewicz: Evidence-based treatment implies that the treatment has been tested. If it is a medication (i.e. Ritalin), it has been tested with the gold standard of a double-blind, placebo controlled study. That means that both the patient and the doctor do not know when the patient is taking the real medicine vs. the fake. In the case of Ritalin, it has been tested with over 200 double-blind controlled trials and is an evidence-based treatment for ADHD. Cognitive Behavioral Therapy has been shown to be effective in the treatment of mild to moderate depression. That is another evidence-based treatment. However, if a treatment is only given "open," in a non-controlled setting, it cannot be considered evidence-based.

Anonymous: Why do so many children with ADHD stop taking there medications?.....it would seem that when the medications are effective, they would be seen as active affirmation of their importance.

Dr. Harold S. Koplewicz: Understandably, most children do not want to have a psychiatric disorder. Taking medication "means they're ill." Frequently, we see teens with ADHD that want to prove they are well and do this by stopping their medications. In addition, the medications do have side effects which many patients, particularly teenagers, do find bothersome, including social anxiety, loss of appetite, and not feeling themselves. When the medication is properly given in lower doses and the teenager better understands the side effects of the medications they usually have better compliance.

christic: I think it is also important for educators and other school staff to be involved. It seems as though if a child's disability is not severe enough, many of these professionals write these children off and do not believe they have a developmental or mental disorder. This can have a huge impact on their success in school as well as socially because the child and the parents know there is an issue but the school isn't familiar enough to recognize the problem.

Dr. Harold S. Koplewicz: It's important that teachers are properly educated about psychiatric and learning disorders in children and adolescents and, most importantly, how they may affect a child's functioning in school. The education of teachers includes the degree of severity of each disorder, i.e. a child can have a mild case of ADHD but it also can impair his or her functioning.

CSC Moderator: Welcome to the NYU Child Study Center's (CSC) Town Hall Meeting on children's mental health. If we are unable to post and address a question during the meeting (11:00 am to 1:00 pm EST), we will reply to the sender via e-mail. Comments are also welcome at [email protected].

maryelsner: For children and adolescents with eating disorders, one of the biggest barriers to care is coverage for appropriate treatment. This access issue pervades our entire mental health system. Not only do we have inequitable mental health benefits compared to medical and surgical benefits, but some mental health conditions are not covered at all by insurance. For those with public benefits, even if a mental health condition is covered, access is blocked because of the lack of providers who take this form of insurance. We can change this in the short-term by telling our U.S. Representatives today that we will no longer tolerate discrimination against mental illness and ask them to bring HR 1424, the Paul Wellstone Mental Health and Addiction Equity Act, to the House floor and vote for its passage. The bill is expected to be voted on in the U.S. House of Representatives by March 15, 2008. By coming together, in our states and on the federal level, child advocates can bring about changes in the coverage and delivery of health care in this country. Mary Elsner Director of Advocacy and Government Affairs ANAD - National Association of Anorexia Nervosa and Associated Disorders Highland Park, IL, email:[email protected], 847.433.3996

Dr. Harold S. Koplewicz: Eating disorders have the highest mortality rate of any psychiatric disorders in childhood and adolescence. It is truly an outrage that families who have a child with this diagnosis are frequently uninsured. I agree with you completely that we must get behind the Paul Wellstone Mental Health and Addiction Equity Act. This is the same bill that Patrick Kennedy is spearheading in the House of Representatives. It is our best chance for parity.

Anonymous: We clearly know that both are biological in nature and require understanding, diagnosis and treatment. Do you believe that every diagnosis requires "treatment"?

Dr. Harold S. Koplewicz: Diagnosis is the most important aspect for any illness and many times there are psychiatric diagnoses that have no treatment available or the treatment is supportive and provides accommodations without any direct intervention with the child. For example, there are many times when a child is sad or demoralized by a situation in life and may appear depressed but does not have depression. Quite clearly, treatment for depression is not the appropriate action for this child.

Lisa450: I can answer the one about not taking your medication. First, it's a matter of the stigma of taking ADHD medication--it means there's something "wrong with you". While we know there's nothing wrong with having ADHD, a status-conscious teen and his peers might not have internalized that yet. Second, there are the side effects, which are sometimes unacceptable to the point that the medication has to be discontinued anyway. And third, while it reduces the scatter-brained, hyperactive side of ADHD, medication can also reduce the creativity and lateral thinking that come along with them.

Dr. Harold S. Koplewicz: Lisa, we agree with you. Please see my response above.

Anonymous: "he is a quirky kid, why give him accommodations, she is just a dizzy blonde, not a child with ADD." The education you are referring to here is more a matter of educating the educators than educating the parents. It is the rare parent who objects to accommodating the child - parents are constantly battling their schools, trying to get accommodations for their children in the face of opposition from school districts. And why shouldn't "quirky" kids get accommodations, if they need them, even without the Asperger's label? We are supposed to be trying to teach all kids, and that shouldn't depend on classifications.

Dr. Harold S. Koplewicz: It's not educating parents; it's educating the public -- parents who don't have a child with a psychiatric disorder -- so they do not object when school budgets increase to provide accommodations for children with psychiatric diagnoses. Without diagnosis, it becomes impossible to demand insurance coverage, school accommodations, and adequate treatment. If it's just a quirky kid or a sad girl, that's just a phase of life and requires no intervention, no expense, no help. It's important for all children to be in schools that support differentiation of instruction so that individuals can learn according to their skills. That's just basic good education.

CSC Moderator: Welcome to the NYU Child Study Center's (CSC) Town Hall Meeting on children's mental health. If we are unable to post and address a question during the meeting (11:00 am to 1:00 pm EST), we will reply to the sender via e-mail. Comments are also welcome at [email protected].

Lisa450: Autistic people often have skills which are at many different levels--to the point that the same child may have a 12th-grade ability in one subject, and a pre-schooler's ability in another. As a child, I was one such example, and only home-schooling solved the problem. How can schools best educate a child who, at the same time, can qualify for both Gifted classes and Special Ed.?

Dr. Harold S. Koplewicz: At the NYU Child Study Center, we are developing specific educational programs for such students through our model educational program, the Advanced Learning Laboratory, for high school students with Asperger Syndrome who are academically-gifted. As we develop interventions that address these students' gifts and disabilities and highly disparate abilities we will be sharing this experience with other interested schools. It is true that this has been a very unaddressed population and our greater understanding of Asperger Syndrome and other related neurobiological conditions is helping us develop appropriate interventions for these types of students.

carla: My son is 16 with very high functioning Aspergers, at a challenging NYC independent school. Should we use the "AS" label for teachers and administrators in the school and others, or just talk about problems and solutions -- without the label. While it may be useful to use "AS" as a shorthand to communicate needs and issues -- will it come back to haunt us re colleges, jobs, etc.? I have heard stories where this is the case. And another question: What's the best way to find out about appropriate colleges for bright kids who need specialized support? Thanks.

Dr. Harold S. Koplewicz: If you are not asking for accommodations, I would not use the label. It is important for teenagers and young adults to learn how to self advocate for their needs. But it is not necessary to disclose a diagnosis in all settings. For example, there is no reason to inform a school that a child has a seizure disorder or diabetes if they are under a doctor's care and no accommodations are being required at a school. Most teenagers want to be like everyone else and therefore both physical and psychological disorders are personal information unless it has to be released to obtain accommodations for a child's success. A neuropsychiatric assessment can inform the student and family about how to best understand the differences the student has so he learns to advocate for his own needs more effectively.

Dr. Harold S. Koplewicz: A number of colleges that offer services for learning-disabled students often have the appropriate array of support that can help a student with Asperger Syndrome. However, depending on the student's level of need, it is very important to plan what supports are necessary and put them in place before the student enters college. Recently, a number of colleges have developed specialized services for students with Asperger Syndrome who may require more social and emotional support. A critical element of college planning is understanding that a student is now an adult, and that communications with parents will not occur. Therefore, comprehensive planning and specific contact people on campus who can support the student must be identified beforehand.

GS: There seems to be an increase in the number of children being diagnosed with a psychiatric disorder and being treated with medication. Why is this? Is the profession overdiagnosing?

CSC Moderator: Welcome to the NYU Child Study Center's (CSC) Town Hall Meeting on children's mental health. If we are unable to post and address a question during the meeting (11:00 am to 1:00 pm EST), we will reply to the sender via e-mail. Comments are also welcome at [email protected].

Anonymous: Regarding using the AS label for your child -- most likely the teachers already know he has Aspergers, so the label will not mean anything new to them. We fear labels, but they are used every day -- professionally or not. A plug here for the REACH Program at the University of Iowa -- a program for young adults with disabilities who need extra support in college. Perhaps not a fit for your son, but others on this webcast?

Lisa450: It does indeed come back to haunt you. Because I was hospitalized for my psychiatric diagnoses--major depression and autism--I was expelled from college, kicked out of an apartment, and fired from a job. Prejudice is alive and well... If you can, until times change and we are accepted as we are, or until you are truly self-sufficient in life and can afford to disclose a disability, keep it secret.

laurena: For educational issues, there is a PTI (Parent Training & Information center) in every state found at taalliance.net. For national research on interventions proven clinically effective for autism, see "Educating Children with Autism" at nap.edu.

Dr. Harold S. Koplewicz: It is a myth that we are over-diagnosing and over-medicating children in the United States. According to the first Surgeon General's report on mental health in 1999, the vast majority of children with psychiatric disorders are going untreated. One out of three Caucasians, one out of five African Americans, and one out of seven Hispanic children with a psychiatric disorder get help. Another myth is that antidepressant medications, specifically Prozac-like drugs, cause children to commit or attempt suicide more frequently. Since the FDA demanded a black box warning on all of these medications there has been a decrease by 18% in the prescriptions for teenagers with depression and an increase of nearly 18% in completed suicides for this age group. The fact is America has trouble believing that children and teenagers can have a psychiatric disorder that requires effective psychotherapy and frequently psychiatric medication. It seems to be the one area where both conservatives and liberals can truly get together - conservatives suggesting that this is just the result of lax parenting and high divorce rate in America and liberals claiming that we're putting children into medication straight-jackets. Nothing could be further from the truth. 12% of the population have a psychiatric disorder. Left untreated, these children are more likely to experience school failure, dropout, substance abuse, and altercations with the legal system. With only 6,300 practicing child and adolescent psychiatrists in the United States, quite clearly the overwhelming majority of the 15 million children and teens suffering with the disorders are being ignored, neglected and left untreated. It is time to better educate pediatricians, teachers and the public that these children deserve the same standard of care that children with diabetes, cancer or any other physical illness receive today in the United States.

Diane Kratt: I am an educator and I did not fully understand my own child and his symptoms for years. I used a SPECT scan to finally understand how his brain is functioning. He is now diagnosed with bipolar disorder and I have become an advocate for the field of mental health and SPECT scans. We have written a book and created a website at thebrainpiece.com I have also joined forces with NAMI to help bring our community forward in this area. I feel very strongly that mental health needs to be thought of and dealt with like any other medical problem. The medical schools need to be the movers and shakers as far as re-educating our doctors from the very beginning. All the appropriate tools and resources need to be utilized. Research has to be abundant. Insurance companies need to understand the medical nature of it. society needs to embrace it as we have cancer and diabetes. Educators need to have a general knowledge of problems and how they affect the students. Hospitals, clinics, medical offices need to be able to understand and diagnose correctly foremost and then start providing appropriate treatments. Counselors and psychologist need to understand the nature of mental health stemming from brain disorders and stop trying to convince parents otherwise. My list goes on and on. I know we have a lot of work ahead of us but we must be tenacious with our message. The whole society needs to be educated and our children's mental health needs to be a top priority for all of us.

Dr. Harold S. Koplewicz: Unfortunately, at the present time, SPECT and other brain imaging tools cannot be relied on to make a diagnosis. However, they offer great promise for the future. Medical schools across the nation are including more information on childhood mental health for all specialties, but most specifically pediatrics, family practice, internal medicine and OBGYN. At New York University we have developed a minor called Child and Adolescent Mental Health Studies (CAMS) to provide courses to undergraduates in childhood and adolescent mental health. Therefore, whether they become a lawyer, teacher or investment banker they should know how real and important childhood mental disorders are.

Elizabeth Hance: I am the parent of an adult child with diagnoses of Asperger's Syndrome and Executive Dysfunction, both neurobiological disorders. As often the case with these disorders, there is the additional coincident diagnosis of Depression. My concern with the 'Ransom Notes' campaign was that I felt it contributed to the stigmas attached to mental health disorders, adding to the public perception that persons with these disorders are somehow inherently 'dangerous.' My concern has only heightened due to the recent campus shooting at Northern Illinois University by a former student presumably suffering from Depression. Children with these disorders and coincident mental health diagnoses are often subjected to bullying, teasing, and social ostracism by the 'neurotypical' - as was my child. Now an adult, she is concerned that the stigma associated with mental health disorders such as Depression will result in her being unemployable or otherwise ostracized by colleagues. Other than a dialogue such as this forum today, what more can be done to address the general public's fear of those suffering from neurobiological and mental health disorders?

Dr. Harold S. Koplewicz: Depression is real and it's a common comorbidity with Asperger Syndrome in adolescence and adulthood. The good news is that people are coming out of the closet, whether it's Mike Wallace, Barbara Bush, Rosalynn Carter, Rod Steiger, Dick Cavett, or Patty Duke. I think that it's our job to make sure that they become the face of depression, and not a college student who stops taking his medication and becomes suicidal and homicidal.

Dr. Harold S. Koplewicz: Thank you for participating in this online forum today. We appreciate your input and look forward to working together with you in the future to improve awareness and care for children's mental health. If we were unable to address your questions during the forum we will answer you directly via e-mail. Comments can also be sent to [email protected]

With the whole question looming overhead of whether or not NYU's Online Town Hall was censored by Dr. Koplewicz, I decided to email NYU asking for Dr. Koplewicz's explanation. It seems, given how few posts actually made it up, and that it sounds like there's a fair few posts which were made by autistic adults which were never included in the active forum, that there may have been some undue censorship on the part of Dr. K. and staff. However, as research is now teaching me, one doesn't assume, but conclude from the evidence. So far, the small amount of evidence does seem to point towards some censorship; however, we do not for sure know the real reasoning for that censorship, such as:

1) Were there so many posts from adult autistics of a similar nature that he felt only a few needed to be allowed so as not to make the conversation unduly repetitive and slow down the real purpose of the town hall?

2) Did Dr. K. just not want to get into this whole advocacy issue that many adult autistics are bringing up, so he censored posts of that nature?

3) Was Dr. K. inclined only to allow posts to which he could answer and make himself and the Child Study Center look good?

4) Was it a technical issue, what with non-Microsoft-related products, and many posts were never actually received? (Not so likely, considering I personally recall getting the notice following submission that my post was now in a queue to be moderated.)

5) Some other reason I can't think of at the moment???

So, to give him the opportunity to answer the censorship accusation, I have written NYU at the email address they had provided for the event (I was unable to find a direct email address for Dr. K. himself):



I would imagine that it'll take some time for me to hear a response-- that is, assuming I ever get a response. I will be very surprised if I hear back anything substantial. But I thought at least, before jumping to conclusions that shouldn't necessarily be reached, I'd give Dr. Koplewicz the opportunity to tell his side of the story and hopefully put to rest any rumors of unfair censorship on his part. --Assuming of course that he didn't unduly censor this event.

On a side note, it would be interesting to see ALL the posts which were submitted but never made it to the forum, regardless of the poster or the topic. We are assuming because so few autistic adults' posts made it up, that it was just our group that may have been censored, but there may actually be more taboo topics that were filtered out as well.

Yeah, after the "Ransom Notes" debacle, it's no surprise that any direct lines of communication to Koplewicz are now being jealously guarded. As for the e-mail addy they provide, it's hard to say how many messages there will actually be forwarded to Koplewicz himself. Maybe all, maybe none. I can't help but imagine that there's some underpaid and over-hassled secretary who has to field all the hate-mail, and routinely gets lectured for passing along messages that The Great Doctor K happens to find unflattering or inconvenient. But who knows -- he may read all of them. For all the good that does.

In any case, he's shown himself to be quite expert at condescendingly trivializing any concerns, no matter how civil, that don't happen to fit well with his own pet agendas. Witness, for example, his oft repeated characterization of the outrage of thousands, in reaction to "Ransom Notes," as being nothing more than a few people who "got their feelings hurt."

In any "first-contact" situation, I'm all for giving people the benefit of a doubt, and then some. But I've seen Koplewicz's dog-and-pony show from start to finish, time and time again. I've just plain run out of doubts with which to give him benefit. :-p

Yeah, I mean the very fact he was saying that kids were undermedicated just because such-and-such statistic of kids weren't being treated at all? Where's the logic in that?

That has nothing to do with the kids that ARE being treated with meds.