I AM CONDUCTING AN INTERVIEW WITH AUTISM SPEAKS
AlanTuring
Deinonychus
Joined: 3 Jul 2011
Age: 68
Gender: Male
Posts: 302
Location: Twin Cities, Minnesota, USA
I think that Zeraeph has given you some very good and well-intended advice.
I urge you to think about it carefully.
_________________
Diagnosed: OCD, Generalized Anxiety Disorder, Dysthemia
Undiagnosed: AS (Aspie: 176/200, NT: 37/200)
High functioning, software engineer, algorithms, cats, books
I think that Zeraeph has given you some very good and well-intended advice.
I urge you to think about it carefully.
I agree. I say I'm living with my parents only to suggest that I am not an "undercover marketing strategist,,"the autistic messiah," or "the antichrist." I've been called all these things and more.
Yeah, I'm an ambitious, overzealous kid. One day I had the whacky idea to ask Autism Speaks for an interview. I didn't really think they would respond.
I discovered I was autistic after some incredibly difficult and confusing years. I moved 35 times before I was ten. My sister died of leukemia at ten. I was holding her hand. My brother had brain surgery after falling 31 feet off a ski-lift that I was riding with him., My dad had open heart surgery. I was misdiagnosed bipolar and pumped full of awful anti-psychotics. I attempted suicide numerous times.
I was miserable. Finding out I have autism was my saving grace. It meant I wasn't just weird and rude. Suddenly my whole life was given a context.
So yeah, I'm way excited. I'm happy for the first time in a long time. I'm so happy I don't know what to do. I'm not supposed to feel this way.
I'm going to keep being happy as long as I possibly can. I will "tone it down a little" on these suggestions. I'm just excited. I honestly thought I would be dead by 25. I had given up. I spent every day waiting to die.
All of this has been a miracle. I can pretend I'm not excited and nervous out of my mind, but it would be just that, pretending.
AardvarkGoodSwimmer
Veteran
Joined: 26 Apr 2009
Age: 61
Gender: Male
Posts: 7,665
Location: Houston, Texas
Tambourine-Man, you do good work. It was bold and daring for you to approach 'Autism Speaks' and you asked good questions. If you remember from the beginning, I thought the questions were perhaps too aggressive and in-your-face. So be it. Those were the questions that needed to be asked.
I know you have had a hard time...that's a lot of trauma to carry...
...and I bet sometimes it's hard to see which way is up clearly...
All you can do is try the best you know how and learn from your mistakes as fast as possible.
...more experience would have told you that all any organisation like "Autism Speaks" would serve you up processed, vaccuum packed PR bumpf - after making you wait a day or so to build tension...
...but hey...LOOK what happened...since you asked the question you picked up "more experience".
Pick yourself up, dust yourself off and start again...Simon Baron Cohen can be very approacheable, and has some fascinating family members...and that could be a really innovative angle if you could figure how to draw him out...
Or...to pass on a great piece of advice someone gave me when I was still kidding myself I was the greatest writer on earth (that's not a hint, I just know my limitations now, but hey, you should see me dance! ), if only for the discipline, try to write about something you are *not* emotionally invested in....and make it catch fire for the reader anyway.
PS - In case you are wondering why no-one is liking your facebook page...you somehow posted the wrong link on AFF!
AardvarkGoodSwimmer
Veteran
Joined: 26 Apr 2009
Age: 61
Gender: Male
Posts: 7,665
Location: Houston, Texas
I wish that was true (and when I was 25 I might even have believed it) but I would be lying if I said I would ever believe that now.
I believe that playing along with an adversary just helps them to take you down more easily, better to spend the same energy away from them, working towards the things you need under your own flag and by your own ethics.
Autism Speaks have absolutely nothing to offer that we need. So why waste the time and energy?
Now, I complained about Dawson's $669,751 salary (a few years ago).
aghogday was unhappy about that. He assurred us that that particular year's salary for her included a one-time moving allowance for over $300,000.
I think he meant that to reassure us.
What the hell is an 'advocacy organization' paying over $300,000 to move someone?
The salaries at Autism Speaks are outrageous.
Some people say, "Well, they're not out of line given what other charities pay their top people."
I say that misbehavior by some people doesn't justify misbehavior by other people.
Here is what I actually stated in the quote back in reply to you to provide clarification in the Autism Speaks thread in regard to your statement that Geraldine Dawson's salary was in the range of $600,000:
http://www.wrongplanet.net/postxf138419-0-75.html
I like accurate facts, and don't mind presenting evidence to back them up, more specifically in 2008, on the form 990, per link, the moving expenses were listed at $270,904.
The actual base salary for Geraldine Dawson listed on the form 990 in 2008 is $373,360.
None of the figures presented in the previous post in this thread about Autism Speaks Salaries are base salaries. They are total compensation which include deferred compensation and non-taxable benefits. The actual base salaries for all of the individuals can be found in the form 990 listed below in the link.
Non-Charitable organizations have to meet Program and Services percentage requirements to be recommended by the Better Business Bureau.
As stated in another thread Autism Speaks admin, fundraising, and surplus expenses were 31% of total funding and 69% percent for programs and services in their latest 2010 annual report; same as listed on the AANE organization's 2011 annual report on their website, a much smaller organization in New England that provides services for individuals with Aspergers. All links listed below for evidence.
Whether or not you agree with the amounts of the salaries paid, beating the BBB standard for percentage of total dollars spent for programs and services as compared to admin, fundraising, and surplus expenses is neither misbehavior on the part of AANE or Autism Speaks.
http://www.autismspeaks.org/sites/default/files/documents/as_annual_report_2010-web_01.pdf
http://www.aane.org/docs/Annual_Report_FY2011.pdf
http://www.autismspeaks.org/docs/Autism_Speaks_Form_990_2008.pdf
I wish that was true (and when I was 25 I might even have believed it) but I would be lying if I said I would ever believe that now.
I believe that playing along with an adversary just helps them to take you down more easily, better to spend the same energy away from them, working towards the things you need under your own flag and by your own ethics.
Autism Speaks have absolutely nothing to offer that we need. So why waste the time and energy?
Maybe for you and some others, but you can't possibly speak for all autistics on this matter, particularly those that have benefitted from the organizations efforts and may potentially benefit in the future.
Playing against an adversary requires a great deal more negative energy than providing constructive criticism and trying to understand opposing views.
AlanTuring
Deinonychus
Joined: 3 Jul 2011
Age: 68
Gender: Male
Posts: 302
Location: Twin Cities, Minnesota, USA
I have higher expectations and higher standards than the Better Business Bureau when it comes to organizations that claim to exist to help others rather than help themselves.
Autism Speaks fails to meet my standards.
_________________
Diagnosed: OCD, Generalized Anxiety Disorder, Dysthemia
Undiagnosed: AS (Aspie: 176/200, NT: 37/200)
High functioning, software engineer, algorithms, cats, books
Aspergers Association of New England 2010
http://www.guidestar.org/FinDocuments// ... 3697-9.pdf
Dania Jekel, Executive Director $75,135.00 (+$2281.00 in "other compensation")
Nancy Schwartz President $950.00
Everyone Else $0.00
The similarity to the pay scales for equivalent positions with Autism Speaks are not immediately apparent.
But you must concede that Autism Speaks are SO MUCH BETTER at helping themselves than helping anyone else.
http://www.guidestar.org/FinDocuments// ... 3697-9.pdf
Dania Jekel, Executive Director $75,135.00 (+$2281.00 in "other compensation")
Nancy Schwartz President $950.00
Everyone Else $0.00
The similarity to the pay scales for equivalent positions with Autism Speaks are not immediately apparent.
The required percentages for each organization of admin, fundraising, and surplus expenses and dollars spent on programs and services for every dollar raised in funding are the same for both organizations. Autism Speaks is an organization that has world wide influence, an extremely complex organization, with thousands of moving pieces, whereas AANE is a much smaller organization, with limited complexity in comparison.
While an approximate salary of $400,000 for a science officer for a research organization, may sound extreme, it is well within limits of a science officer for any large research organization; Geraldine Dawson has a storied career, in the field of Autism research, not many people in the world can match her credentials in this area; the information is detailed on her bio in Wiki. This is no random individual in the field of science. There is a price to pay for excellence.
Here are some details from Wiki:
http://en.wikipedia.org/wiki/Geraldine_Dawson
EducationDawson received her Bachelor of Science degree in psychology from the University of Washington in 1974 and her Ph.D. in Developmental Psychology and Child Clinical Psychology from the University of Washington in 1979. In 1980, she was a postdoctoral fellow and clinical intern at the Neuropsychiatric Institute at UCLA, where she specialized in neurodevelopmental disorders. She became a licensed practicing child clinical psychologist in 1980.
[edit] CareerDawson has had an active career as a scientist and practicing clinical psychologist focusing on autism spectrum disorders and child psychopathology. She has published extensively in peer-reviewed scientific journals on autism and the effects of early experience on the developing brain. She received continuous NIH funding for her research from 1980–2008 when she left her tenured faculty position at the University of Washington to become Autism Speaks’ first chief science officer.[5] At Autism Speaks, Dawson oversees $20–30 million in annual research funding, including funding for the Autism Treatment Network, the Autism Global Public Health Initiative, the Autism Genetic Resource Exchange, the Autism Genome Project, and the Autism Tissue Program.
Early in her career, Dawson was an assistant professor of child clinical psychology at the University of North Carolina at Chapel Hill and affiliate of the TEACCH (Treatment and Education of Autistic and related Communication-handicapped Children) program from 1980–1985. In 1985, she returned to her alma mater to join the psychology department faculty, where she directed the University of Washington Child Clinical Psychology Program (1985–1991; 1999–2004). From 1996-2008, Dawson was Founding Director of the University of Washington Autism Center, which worked with Microsoft Corporation to set a precedent for companies to provide insurance coverage for autism early intervention.[6] At the UW Autism Center, she was director of three NIH Autism Center of Excellence Awards, which provided funding for a multi-million dollar multi-disciplinary autism research program focusing on genetics, neuroimaging, early diagnosis, and treatment.[7] At the Autism Center, Dawson also oversaw an endowed treatment center for children and adolescents with autism, which provided multi-disciplinary diagnostic and treatment services for children with autism from infancy through late adolescence. Dawson has served as Associate Editor for three scientific journals: Journal of Autism and Developmental Disorders (1996–2000), Development and Psychopathology (1999–present), and Psychophysiology (1999–2000), and serves on the editorial boards for Autism Research and the Journal of Neurodevelopmental Disorders. Dawson’s work has been featured frequently in the media, including programs such as the Jim Lehrer Newshour, PBS Scientific American Frontiers with Alan Alda, The New York Times, among many others.[8] In 2008, Dawson was featured in the journal, Science, when she began her new role at Autism Speaks.[9]
Dawson’s research has focused on early detection and intervention, brain dysfunction (using electrophysiology and functional magnetic resonance imaging), and genetic studies. Her key scientific discoveries include demonstrating that maternal depression can influence early brain activity and stress responses of infants and children, the detection of autism symptoms in infants, empirical validation of autistic regression, and elucidation of the nature of early brain dysfunction in autism. In addition, in collaboration with Dr. Sally Rogers, Dawson developed and empirically-validated the Early Start Denver Model, the first comprehensive early intervention program for very young children with autism.[10] Dawson pioneered the use of home videotapes to study early symptoms of autism and the use of electrophysiological techniques to study brain function in very young children with autism.
Dawson has testified before the United States Senate to advocate for individuals with autism and their families: in 1999 in support of the Child Health Act of 2000, in 2002 on behalf of the Federation of Behavioral, Psychological, and Cognitive Sciences, and in 2009 at the request of the Senate to provide an update on the current state of autism science.[11]
[edit] Honors, Awards and AppointmentsDawson’s honors and awards included the Association for Psychological Science James McKeen Cattell Lifetime Achievement Award (2012), Geoffrey Beene Rock Star of Science Award (2010), Autism Hero Award from the Cure Autism Now Foundation (2006), Autism Society of America Award for Research Contributions to the Autism Community (2004), Autism Society of Washington Medical Professional of the Year (2004), Washington Autism Society Achievement Award for Outstanding Service (1996), Autism Society of America Award for Valuable Service (1989) and the Gatzert Child Welfare Award (1977). Dawson has been an advisor to the National Institutes of Health since 1989.
She currently is a member of the National Institutes of Health Interagency Autism Coordinating Committee, a federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning Autism Spectrum Disorders.u From 1998-1999, she served on the NIH Committee on Practice Parameters for Screening and Diagnosis of Autism. From 2001-2, she was a member of the NIH Committee on Practice Parameters for Treatment of Autism. From 2003-7, she was a member of the NIH Scientific Advisory Panel to establish a 10 year road map for autism research. In 2008, she chaired the NIH Scientific Advisory Panel’s subcommittee on Autism Treatment Research. Dawson also served on the NIH Consensus Panel on Phenylketonuria and as a panelist for the National Vaccine Advisory Committee Vaccine Safety Working Group. Dawson has served on the NIH Child Psychopathology and Treatment Grant Review Committee, the NIMH Grant Review Biological and Neurological Subcommittee, and the NIMH Grant Review Committee for Behavioral Science. She also served on the steering committees for the NIH Collaborative Program of Excellence in Autism and the NIH Studies to Accelerate Autism Research and Treatment Program.
Questions were asked, answered, and the truth comes out, demanding that Autism Speaks disbands and gives all their money to ASAN is the only reason, the only talking point, that ASAN has to exist.
It is not going to happen, research into autism is not going to stop, qualified and talented people will continue to lead, and rejecting reality is just an excuse to do nothing, and complain about those who act.
Reading over this thread I find the voices that Ayn Rand wrote about in Atlas Shrugged, the Unions and Art Critics who sought to drag down and contain talents, which they did not have.
Autism Speaks should be Unionized by autistics, and the Science Board should be staffed by Community Activists. Without education or experience, they know better than everyone. While they call anyone who would deal with the world a "Token Aspie" Autism speaks has more than the quota of one in a hundred already.
If autistics are so great, they should have started something, anything, by now. All that is heard is complaints, and calls to confront grandmothers on the street. That is not a program, it is a Public Relations disaster.
It is the usual, those that can't, won't, say it is hopeless, attack those who try, and make unreasonable demands. First they must give all the money to ASAN. As the money was raised for research, that would be fraud.
Calling for the end of autism research is failing to gain support.
Autistic Activists have failed to produce one suggestion of how our lives could be bettered, except ASAN who sticks with, "Give us the money."
Winning the hearts and minds of the parents and grandparents of autistics is not done by confronting them on the street. That is where all of the money is coming from. They give millions to Autism Speaks, and not a dime to ASAN
The mindless attacks are aiding and abetting Autism Speaks. Stating clearly that them disbanding is your only goal, does show the narrowness of your program to all.
This is clear evidence that the world cannot expect the autistic to self advocate, that they do need professional outside help.
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