The NYU Child Study Center Town Hall Meeting...hmmph

Well, I was hopeful. I even gave up a much-needed manicure for it. I have 3 hours a day to myself, for myself, where I have nothing to do but whatever the heck I choose. I felt strongly that today I needed to stay here at my laptop and see what this "Town Hall Meeting" was all about.

I will say I'm glad NYU Child Study Center actually did this, and I'm glad they are reaching out, it appears, to further this topic of public awareness (in, hopefully, a respectable manner). But, it seemed to me that while some good questions were asked, there weren't any answers. In fact, most responses felt more like pre-written soundbites. I don't know, maybe it was just me. The forum itself was a little flaky at times, it had a few kinks in it. My question was posted by "Anonymous" instead of the user name, S.L., I had chosen. Here it is:

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.

And, the response:

Federal law mandates that at 15 every child classified with a disability begins a who are graduating from high school. Adult agenices are begining 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.

But what are you doing? What is NYU doing? From that "answer" I can only assume they do not have any such programs in place. The overall theme was "early diagnosis, intervention" and it appears they are holding onto that as being all that's needed. My daughter had early intervention (from before age 1 for developmental delays!), she's been followed by a neurologist from before she was a year old. Check, check. And now we wrangle our way through the school district, and hope they are helping my child in the best way possible.

I am still very concerned for her future. What will her options be after high school? What happens when her father and I are no longer around? What is waiting for her? Right now, the answer is nothing. I feel as if I'm running a marathon (unfortunately on a treadmill, as I feel I'm going nowhere) to find something for my child and all the others like her, who one day in the future will be 18. That day gets closer and closer, with only a bunch of talk about early identification and intervention, second to that is "cure."

My Ransom Notes Letter...

I meant to post my letter last month...but we were all sick here and the holidays turned things upside down as usual. So, finally, here is what I sent to Dr. Harold S. Koplewicz at the NYU Child Study Center.

Dear Sir,

I am writing to voice my concern regarding the ransom note campaign that your Child Study Center will be running. I am the parent of an autistic child, and I myself have had to deal with depression, ADHD, & OCD. I do not think this campaign will be helpful to anyone. It does not help parents identify signs or symptoms, if a teen or child reads the signs it will surely make them feel more hopeless.

Furthermore, each ad stigmatizes the diseases and disorders. The themes of possession and kidnapping do nothing but spread the idea that those who suffer are inhuman. As a child and teenager who required fairly intense medical intervention to overcome some serious issues, I know how society judges and treats the mentally ill and the disabled. The public doesn't understand. Ads like this push the public into further misunderstanding, and promote stereotypes. It was my understanding the goal of this campaign was to spread awareness and end the stigma surrounding these conditions. I feel this campaign is doing just the opposite.

As an artist, I do see the attractiveness and creative angle of these ads. They are also eye-catching and thought-provoking. Unfortunately, they lack accurate and helpful information. They tend to be more of an ad to promote fear and hopelessness. I sincerely hope you will reconsider these ad campaigns, and further ads will be of a kinder, more accurate, and more helpful nature.

I wish I'd had the time to post a celebratory post a few weeks ago when this all came down...I'm thrilled to see the great change we all created. It surely has refueled me, and also made me feel like real change can happen. I think more & more voices are being heard each day, and while we have long road ahead, it is more possible than ever for us to achieve all we are fighting for. I am filled with hope for the New Year.

Happy New Years!

NYU Child Study Center: Ransom Notes Campaign

I just opened the email from the NYU Child Study Center regarding their campaign for "public awareness" for childhood psychiatric disorders. This is their intro before they show the posters.

Don't let untreated psychiatric disorders take your child.

The NYU Child Study Center's "Ransom Notes" public service campaign is designed as a provocative wake up to create awareness and spark dialogue about childhood psychiatric disorders, one of America’s last remaining silent public health epidemics. Twelve million American children and adolescents face daily battles with psychiatric disorders. Untreated, these children are at risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment. Children who do receive appropriate treatment, however, can learn to function and thrive.

"Ransom Notes" may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We acknowledge the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.

There is nothing here that I find wrong. I hope every child suffering from depression or who is suicidal receives help. I think there does need to be a national dialogue, better information for parents and teens, training for educators, etc. I do feel more needs to be done for teenage depression and other similar issues. It breaks my heart that children and teenagers are affected by this. As a teen, I too battled depression, and was suicidal. This led to inpatient care at a facility, years of counseling, and medication. When I see myself as a teenager, I wish so much I never had those feelings & that I had accepted and appreciated myself. I wish I had one shred of self-worth. I had issues with self-esteem, anxiety, OCD, & also ADHD. I remember feeling like a freak. I remember the awkwardness of returning to school after being hospitalized--I had missed the first 2 months of school. Thankfully, I was accepted by my classmates. This is a rare exception to the rule. I was blessed to attend a school with (for the most part) very grounded individuals. Overall, we didn't judge and the various "cliques" all hung out with one another. Thank God for that--I can't imagine being stigmatized for my personal issues, especially at that time when I was very fragile.

So, I hope a day will come where other kids & teens who are dealing with emotional or psychological disorders will not be judged or criticized. Most often, it's the parents who have issues. Either they're upset their child is "not normal," or they blame themselves, or they are ashamed and don't want neighbors, friends, or even family finding out what their child is going through. It's something that is whispered & shamefully admitted. You shouldn't feel ashamed if you are having emotional or psychological problems. I am all for an ad campaign that would promote awareness and acceptance. I think some parents do miss the signs, while their child suffers. Ads that would alert parents to the obvious & often-missed signs would be helpful.

The NYU Child Study Center claims its aim is NOT to stigmatize childhood psychiatric disorders. However, after reading these ads, I was disturbed. I honestly feel they are doing that which they intended not to do. For one, I'm not entirely sure why they grouped together Autism with Depression, etc. If their concern is depression & suicide, address that. Whether someone is autistic or not, help their depression. Why were the posters for autism put into this campaign? They seem like the odd man out.

First & foremost, the majority of families who have a child with Autism, Asperger's, or ADHD often are obviously aware of it. An ad campaign like this--supposedly geared toward teenagers or parents of teens, does nothing to help parents or autistic young children. So, to make posters like these--which once again, creates a stigma that people on the spectrum are inhuman, is pointless & harmful. The words that are used are: "possession," "detriment to himself and those around him," "destroying," "life of complete isolation," and then the Autism poster which is a long sentence of hopelessness & despair.

The posters are inaccurate, further give weight to existing false & hurtful stereotypes, and, again, DO NOTHING to help either autistic children, teens, or adults, or their parents and family. So, what is the point?? Is there a connection here to Autism Speaks that I am missing out on? Or is it simply that this Child Study Center sees how successful Autism Speaks has been with their fear & dread campaigns, that they want to rake in the big dough too??? I'm so sick & tired of these "foundations" preying on the fears of parents & basically using my child to make a lot of money. A lot of money that will do NOTHING for my autistic child.







So, with these posters, who are you helping? Are you really making parents aware? Odds are, this type of "awareness" campaign will not help parents. Their children will most likely get a diagnosis, if they truly have ADHD or Autism. So, who are these ads for then? They are the same propaganda that Autism Speaks sells--Autism has stolen your child, he is not human, he should not be afforded civil rights.

How about a poster about how people who fidget or don't make eye contact or may have difficulty in social settings be accepted? How about identifying these people as valuable members of society? How about respect? What about teaching kids it's not right to bully someone, simply because they are different. This center had an opportunity, obviously they had the funds, to make a campaign that would de-stigmatize Autism and the psychiatric disorders they are talking about. But, they neither achieved the ability to create public awareness nor truly help the people they are supposedly advocating for.

I have a little less negativity toward the posters on OCD & depression. I'm not offended by them as I am by the ADHD & Autism ones--those are highly offensive, in my opinion. I do have issues with them, however. With regard to OCD, typically, if someone has it to the extent that they need help, it will be fairly obvious. If a parent doesn't recognize the signs, that is a result of poor or absent parenting. All the posters in the world will not improve that. I used to count everything, and I mean everything. I hated public restrooms. For years, I never touched a doorknob--either I'd have someone else open the door, or I'd cover my hand with fabric. I had many rituals. If you spent a 1/2 hour with me, it would be very apparent. I did need help, and because it was obvious and affecting my life, I received the help. Honestly, if your child is not washing their hands until they are raw, would you realize they had OCD from this poster? It breeds fear with the last line of, "This is only the beginning."



The fear-mongering continues with the depression poster. While I do agree the statements made in the poster do depict what depression can do, I do not like its delivery. What does this poster do to make someone aware of depression? Would I realize my teenager was depressed after reading this? The only parents this will help, are those who are well-aware their child is depressed. Perhaps it will prompt them to get more help. But, to be honest, this is a very small minority. I hid my depression very well from my family. I'm great at putting a smile on my face & hiding all of my emotions. I was a cutter. I hid that well too. It was not until I was to the point of killing myself, that my family became horribly aware of the reality of my situation. A poster like this would not have had an affect on my family. So, again, who is this helping? If I'm a teen who is depressed, reading this, would most likely make me even more depressed and feel more helpless.



Along with my boatload of problems mentioned above, I've also had issues with food & diets. I've starved myself and binged and purged. To be honest, the bulimia poster is the only one I don't really have a problem with (& by that I mean, this poster alone would not lead me to write this blog entry, call & write the center and its sponsors, and email everyone I know about this ad campaign, and how to fight back...), as far as its content. Again, the delivery sucks, and I hate all the dark, fear-inciting, kidnapping theme. They really think it's not stigmatizing?? The problem also is, again, who is this helping? The parent who is aware their child is bulimic or anorexic, may be prompted to get more help after seeing this. But, for the vast majority of parents who are clueless to their child's eating disorder, this does nothing for them. How about listing some signs of what to look out for? You could have this same poster, but be sure to show what to look out for. Marks on their knuckles, going to the bathroom right after a meal, dental issues, hair falling out, etc. There are PLENTY of signs to make parents aware of.



So, overall, I give this ad campaign a big fat failing grade. Not only does it not promote awareness nor help parents, it stigmatizes & promotes stereotypes about ADHD, Autism, & OCD. I wonder the price tag on this venture. I wonder all the good those types of funds could have done, if put in the right hands. Posters & pamphlets for parents, with pertinent information. Posters & pamphlets for children and teens that promote acceptance, discourage bullying, and let affected kids know they are important and valued.

Please, be informed:
http://www.autismability.com
http://www.autisticadvocacy.org

And, get involved, voice your opinion:
NYU Child Study Center:
Dr. Harold S. Koplewicz
Phone: 212-263-6205
Fax: 212.263.0990
Dr. Koplewicz's E-mail: Harold.Koplewicz@nyumc.org
Communications Department:
Beth Rowan, Director of Communications
212.404.3757
Beth.Rowan@nyumc.org
NYU Child Study Center
577 First Avenue
New York, NY 10016

Also, check out:
http://autisticbfh.blogspot.com/2007/12/held-for-ransom.html
http://djdialogue143.blogspot.com/2007/12/follow-up-from-yesterday-my-letter.html


And...a DELAYED update, but a great news update none the less:
http://www.autismvox.com/ransom-notes-campaign-is-over/