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April 26, 2012 An important and breaking news story this week about how vulnerable our young people on the autism spectrum can be to abuse and bullying---not just from peers but from teachers (see the link below). It is daunting that the concept "presume intellect" is so radical for so many to adopt as the truth. As someone who endured years of bullying (and indifference to it by teachers), I am so saddened to learn that these issues persist and haven't really changed since I was in grade school. I was at the very brink of suicide because I was made to feel worthless and disposable.
I am a contributor to Sharecare.com, an online, national health and wellness platform. I have answered six key questions about bullying on Sharecare. Click on the link below to read my plan for teachers and administrators to address bullying, then click on "More related answers from William Stillman" to read the rest of my responses:
March 30, 2012 Per the New York Times, the Centers for Disease Control and Prevention now estimates that autism impacts one in 88 children: Diagnoses of Autism on the Rise, Report Says
Published: March 29, 2012
The likelihood of a child’s being given a diagnosis of autism, Asperger syndrome or a related disorder increased more than 20 percent from 2006 to 2008, according to a report released on Thursday by the Centers for Disease Control and Prevention. The new report estimates that in 2008 one child in 88 received one of these diagnoses, known as autism spectrum disorders, by age 8, compared with about one in 110 two years earlier. The estimated rate in 2002 was about one in 155.
The frequency of autism spectrum diagnoses has been increasing for decades, but researchers cannot agree on whether the trend is a result of heightened awareness, an expanding definition of the spectrum, an actual increase in incidence or some combination of those factors. Diagnosing the condition is not an exact science. Children “on the spectrum” vary widely in their abilities and symptoms, from mute and intellectually limited at one extreme to socially awkward at the other.
Children with such diagnoses often receive extensive state-financed support services — which some experts believe may have contributed to an increase in the numbers.
Doctors working to update the Diagnostic and Statistical Manual of Mental Disorders have proposed significant changes to the definition of autism, which are due to take effect in 2013. If the changes are carried out, some experts say, they could reduce the number of children being given a diagnosis.
“One thing the data tells us with certainty: There are many children and families who need help,” Dr. Thomas R. Frieden, director of the C.D.C., said in a news conference on Thursday.
C.D.C. researchers did not meet any of the children they judged to have an autism spectrum disorder. The team made the decisions based on evaluations of the children, drawn from 14 states. The estimated rates in those states varied widely, from one in 210 children in Alabama to one in 47 in Utah.
“This is a fourfold difference,” Dr. Éric Fombonne, a psychiatrist at McGill University and Montreal Children’s Hospital, said in an e-mail. “It means that ascertainment is unequal across states. Thus, in the next surveys, as ascertainment will most likely improve where it is currently low, average rates are bound to increase. Is there, in addition to this, a real increase in incidence? It’s possible, but cannot be determined from the study design.”
Over all, boys were almost five times as likely as girls to get such a diagnosis — at a rate of one in 54, compared with one in 252 for girls.
The sharpest increases appeared among Hispanic and black children, who historically have been less likely to receive an autism spectrum diagnosis than white children.
March 29, 2012 2012 marks the ten-year anniversary of the publication of Demystifying the Autistic Experience: A Humanistic Introduction for Parents, Caregivers and Educators, my first book about the autism spectrum and the first published work on autism to proffer the philosophical mantra "always presume intellect." (For those curious or interested, this book also includes my autobiography.) To learn more about Demystifying, check out what others have said about it on Amazon.com: http://www.amazon.com/Demystifying-Autistic-Experience-Humanistic-Introduction/dp/1843107260/ref=ntt_at_ep_dpt_12 While the book didn't exactly set the world on fire as I fantasized it might at the time, I was cognizant that I was proffering some rather revolutionary concepts that would require some global processing. I knew it would take about five to ten years for the concept of "presuming intellect" to catch on. Sadly, it hasn't...yet. I underestimated how extremely radical a concept it truly is, particularly in the pathology-driven medical and psychiatric fields that continuously influence (dare I suggest brainwashes?) parents into believing the worst is true of their children in terms of ability and future potential. Now with funding cuts abounding, it becomes particularly perilous to determine a course of action for others to move forward; and the threat of the pendulum swinging backward 60 years to the era of institutionalization---because it's cheaper and easier---is very real.
March 21, 2012 As some of you may be aware, I am a contributing member of Sharecare.com which is an online health and wellness collaborative between Dr. Oz, OWN (Oprah) and Discovery Communications. Presented in a question-and-answer format, Sharecare.com enlists medical, psychiatric and related experts to respond to frequently-asked questions. (Sharecare may prove to be a valuable resource regarding any number of health areas.) My area of contribution is, of course, the autism spectrum, and my answers to parents' concerns and inquiries, in addition to other information, may be found at the following link: www.sharecare.com/user/william-stillman Please feel free to pass this information on to others who may find it useful, or submit questions of your own.
March 20, 2012 Last night on NBC Nightly News with Brian Williams, there was a story on Kate Middleton, Duchess of Cambridge, and her visit and first public speech at a hospice for children. I continue to be so very impressed by this gracious young woman who seems truly lovely and unassuming. It was reported that Kate does her own hair and make-up, and was wearing a dress that had belonged to her mother. Seeing this lovely young woman interacting with the children and seeming slightly shy about making her speech, I must admit I wept. Here is someone who understands humility; here is a young woman who recognizes how to preserve public impressions of her persona through being frugal and graceful; and here is a role model for little girls who want to be her and boys who can admire her. She is the antidote to the violent, pornographic, noisy, ridiculous red-carpet, housewives-chaos, Kardashian-superficial culture we have grown too accustomed to. Thank you Kate for being so elegant and graceful yet accessible to the masses and with altruistic purpose. I appreciate the fine example you set and the good influence you project. March 1, 2012 And a child shall lead them... The sage musings, observations, and poetry of 12-year-old Danson may be received here: http://dansonwambua.wordpress.com/
January 30, 2012 My thoughts on the new television program Touch may be found here: www.newpagebooks.blogspot.com/2012/01/tempering-touch-by-william-stillman.html
January 23, 2012 Important announcement from GRASP regarding the proposed changes to the forthcoming edition of the Diagnostic and Statisical Manual which defines the autism spectrum for the psychiatric community: There is breaking news regarding the forthcoming fifth edition of the Diagnostic and Statistical Manual (DSM-V), which is due out in early 2013.
Spectrum individuals who are better able to mirror greater society will most likely not qualify for a diagnosis under the most recent revisions. Please contact the DSM-V committee through the American Psychiatric Association (see below) and protest their newest proposed changes.
Though our membership was split on the subject, GRASP supported the changes in terminology that were first reported almost two years ago. Eliminating the diagnosis of Asperger’s Syndrome (AS) (as well as Pervasive Developmental Disorder-Not Otherwise Specified), and putting everything under the umbrella of “autism” was jarring, as many of us have gotten used to the term “AS” to explain certain aspects of our identity. But seeing as no discernible line in the sand could be drawn that truly separated AS from autism (though the clinical world tried), the merger made theoretical sense. Furthermore, any spectrum diagnosis, in essence, served us well enough as it placed our behavioral differences within the context of wiring, and not through the judgmental lens of interpreted character deficits—as had existed before AS was legitimized in the DSM-IV in 1994.
But sadly, we may be heading back to the days of character deficits. Now it appears that the terminology is not all that will change with the DSM-V. Now, it appears that only the more severe cases will qualify for diagnosis or services.
In a report being published in tomorrow’s New York Times, the DSM-V committee appears to be acting in consort with clinicians who believe there is a presence of “over-diagnosis” of spectrum conditions in the U.S. While the clinical world was merely adhering to the requirements proposed in 1994’s DSM-IV, the DSM-V committee inexplicably seems to want to reverse the clock back to 1993, simply because the social services, educational, and advocacy worlds are not yet able to accommodate the numbers of people who are on the spectrum. Oddly enough, we believe that the majority of the clinical world does not believe in problems of “over-diagnosis,” and that the DSM committee surprisingly represents a minority opinion (most, if not all members of the committee have worked exclusively with only the more challenged end of the spectrum). Lastly, the ideas of “over-diagnosis” are almost always heard through bitter, emotionally-unhealthy tones; revealed as theories that are usually the product of people too afraid to admit how dumb we all were prior to 1994.
Suspiciously, the DSM-V committee has released these changes one month after taking away the opportunity for us to make comments (through their website) to proposed revisions. In lieu of the means to write them, please instead call the DSM authors, the American Psychiatric Association, at 703.907.7300 and tell them that you object to these changes. Not only will tens of thousands of spectrumites—if not more—be at risk for going back to the days when we were thought of as rude, nervous, or incompetent; but equal numbers of spectrumites will happily be denied the services they need by financially-strapped agencies. Fiscal concerns cannot be invalidated, but this is not the answer.
It is very hard for many to understand how diverse, and how complicated the autism spectrum really is. But to have what should be the leaders of our clinical world (a) subtley waging a competition of suffering between opposite ends of the spectrum, by invalidating the negative experiences of one side, and (b) succumbing to such a dumbing-down of the autism spectrum, if not knowledge itself, is unconscionable. Please make that call.
Sincerely,
Michael John Carley
Executive Director
GRASP
The Global and Regional Asperger Syndrome Partnership, Inc.
666 Broadway, Suite 825
New York, NY 10012
p + f = 1.888.474.7277
www.grasp.org
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