Changing Minds: Advocates Reshape How We Think About Autism

 @azautisticadvocate Correction to website address for John Elder Robison's statement:  http://www.wrongplanet.net/article428.html

 @azautisticadvocate No, Peter Bell was a marketing executive for McNeil Consumer and Speciality pharmaceuticals a subsidiary of Johnson and Johnson.  That company does not market risperdal; it is documented on the company website.  Ortho-McNeil-Janssen, another subsidiary of Johnson and Johnson, was responsible for marketing Risperdal.  Alex Gorsky was the President of Janssen when the claims against that subsidiary of Johnson and Johnson and Ortho-McNeil-Janssen were made over improper marketing practices associated with Risperdal.  Gorsky is currently the CEO of Johnson and Johnson, and the focus of all the claims associated with Risperdal.  The lego shaped stress toys were not designed for children, they were provided just like pens and other items that pharmaceutical sales people drop off at doctor's offices for advertisement.  That has absolutely nothing to do with Peter Bell or the subsidiary he worked for.   However,  it has been established as an internet myth, in comments of a few articles attempting to implicate Peter Bell in nefarious activities.  Peter Bell has a spotless career reputation and would have never been nominated by the President and approved by congress to a Government Council for Intellectual Disabilities, if there were any legitimate claims against him for nefarious activities.  Autism Speaks has no authority over the FDA.  If Risperdal is determined unsafe, the FDA is responsible for discontinuing the approval of the drug to treat associated symptoms with autism. Here is the link below to John Elder Robison clearly stating he is against the phrase "cure for autism", if you have the name of a source that suggests otherwise you can provide it if you like.  Autism is medically defined as a disorder not a person, and there are no individuals working for Autism Speaks defining it as a person, whether the word eradicate or eliminate was used by anyone in that organization other than Ms. Wright specific to remediation of the impairments associated with any actual autism spectrum disorder.  Elimination of the impairments that make a disorder or the disorder itself is not the elimination of people or genocide by any accepted legal or medical definition.  There is no requirement for anyone to identify with their disorder, occupation, parental status or any other association.  That is a personal choice.  http://www.wrongplanet/article428.html

 @Grayboy70 Peter Bell, now vice-president of Autism Speaks, was the former marketing director for Johnson and Johnson, specifically in charge of marketing Rispderdal.  Why I brought this up is because he is charged with improperly marketing this drug DIRECTLY to children, since while he was in charge of the marketing, they printed a bunch of Lego toys with the drugs and distributed them, free of charge, to doctors offices around the USA.I have seen several cases of NMS, all tied to Risperdal, Abilify, or both, including one fatality.  I also work with some children who have mental illnesses who are on these medications.  I have never seen this side effect in any of my clients who are mentally ill, ONLY in my clients who are Autistic, leading me to believe that we people on the spectrum are more sensitive to this class of psychiatric drugs and that they should be prescribed and used with great caution.If Suzanne Wright meant that she wanted to eradicate or reduce severe complications of Autism, then she should have stated THAT, rather than directly implying genocide as she did in her statement.Mr. Robison has stated publicly several times that if there were a cure for  his Autism, he would take it immediately.

Correction to comment above.  Total annual costs associated with Autism in the US is 137 billion dollars, per the recent research, showing an increase over the $35 billion dollars estimated in 2007. Per the following link from Disability scoop.  http://www.disabilityscoop/2012/03/30/autism-costs-billion/15286

 @azautisticadvocate No, I am not either willfully ignorant or simply lying.  I provided two sources to refute your claim about John Elder Robison, in my last post, easily found with a google search, and already provided a link to the interview from an Autism Speaks Executive official, from the wrongplanet site in my second post, on the number of board members and employees on the spectrum that Autism Speaks has in their organization.  Whether or not you can provide a simple source that can be easily found with a search on google for your claim on the additional times you suggest the eradicate term was used by employees of the organization, Ms. Wright was not referring to eradicating people with Autism in her 2008 statement, she was referring to eradicating the difficult symptoms of severe forms of Autism Disorder, not Aspergers syndrome.  The term Autism can be used to describe the five pervasive developmental disorders or Autism Disorder, including Regressive Autism; it is a matter of context and clarification of conversation as to whether or not all the conditions and associated co-morbids are being addressed when these issues are discussed.  Autism Speaks does not recommend the use of any medicine for treatment on their website; that disclaimer comes in a clearly detailed paragraph before the description of any of the educational information on the Risperdal medicine currently approved by the FDA for the remediation of self injurious behavior, and aggressive behaviors in some cases of ASD's.  The organization makes it clear that those treatment decisions must be made between the physician and the parent and/or the patient, including the treatment of any off label uses.  There is a risk of neuroleptic malignant syndrome in many psychiatric drugs, I'm not sure what your point is on directing attention that a person that works for autism speaks previously worked as a marketing manager for the sale of drugs, including Risperdal; that is a common professional position, in the medical industry..

 @Grayboy70 If I could paste links, I would, however, my claims are well-documented, leading me to believe that you are either willfully ignorant or are simply lying.  It is, unfortunately, difficult to educate someone who is willing to engage in either activity.  As for co-morbidities, yes, some of them can be fatal, I've had 2 clients die of SUDEP - but I've also had one client who died of Neuroleptic Malignant Syndrome due to Risperdal, and know 2 adults who nearly died from the disorder, both of whom are high-functioning and were able to tell the doctors to take their meds elsewhere BEFORE they were killed, unlike my former client.  "Coincidentally" the former marketing manager for Risperdal is WORKING for Autism Speaks, and it is one of the first medications they recommend to families to try to reduce multiple symptoms, most of which are off-label uses of the drug.

 @azautisticadvocate There is only one record of anyone associated with Autism Speaks using the word eradicate autism with a Google search, and there is no record of John Robison stating he desires a cure for himself for Autism.  Autism Speaks definitely would like to eradicate some of the difficult symptoms that occur with autism, but uses the word remediation instead of eradication, in acknowledgement that some people do find the word eradicate offensive.  John Robison was interviewed in psychology today in 2009 and most recently in an article on the wrong planet website and he explains that he does not agree with the use of the term Cure, however he agrees with the definition used by Autism Speaks of the remediation of serious symptoms associated with the spectrum.  There is no us in Autism only individuals.  There is currently 2027 diagnostic combinations to arrive at an actual diagnosis of just one of the spectrum disorders, autism disorder, and possible for two people diagnosed with autism disorder to meet 6 of 12 criteria impairments, and not share any of them with another person meeting 6 other of the 12 criteria impairments.  Autism is only a diagnostic label and described criteria; the underlying neurological, biological, and environmental causes are potentially much more complex than those 2027 diagnostic combinations to arrive at a diagnosis of autism disorder.  That information is sourced by the autism research scientist, Jon Brock, on his crackingtheenigma website.  The founder of autism speaks has a grandson on the spectrum, the vice president of the organization and 11 of the board members disclose they have children on the spectrum.  It is true that some of them are not at all happy that some of their children are burdened by difficult symptoms associated with the spectrum and want to alleviate those burdens some of those children face, but absolutely no evidence that any of these people hate their children, and mean spirited if someone were to suggest they do without evidence of it.  And there is every potential that any of those individuals could be as "autistic" as you or I am without disclosing a diagnosis, or a self diagnosis, as they have a legal right to their privacy, associated with their medical diagnoses.  It could be potentially no less offensive of accusing some of these individuals as neurotypicals, without even knowing who they are or ever meeting them, than if I accused you of not being autistic, because you have indicated you have established and maintained peer appropriate friendships that you indicate you share reciprocal emotional and social interaction with.  One can be currently diagnosed without either of those two identified  criteria impairments, but that technically changes with the DSM5 revision of ASD, per subjective analysis of diagnosing professionals.   Autism Speaks has identified they have more than one employee and board members on the spectrum, in the interview that I linked from the wrongplanet website, when directly asked this question, but they cannot legally divulge the information of the identity of those individuals, without their permission.  I'm not quite sure of your context about who has autism and who does not have autism; autism speaks has always publicly identified Asperger's Syndrome as part of Autism Spectrum  Disorders on their website, however there has been much discussion in the past among research scientists as to whether or not the underlying causes of Asperger's Syndrome are the same as some of those diagnosed with Autism Disorder.  At least in the cases of the subgroups of individuals with fragile X syndrome, and regressive autism, the causal factors appear to be much different, and potentially different among each individual in each subgroup.  People on the spectrum are extremely diverse; I doubt you expected to find someone with Autism Speaks as a special interest for a monologue.:).  I like facts, but I'm not a person that easily gets wound up with negative emotions toward anyone or any organization, without real evidence of intentional bad doings, particularly when people are facing hardships in life, and are evidenced as being helped by those people and organizations.  I am diagnosed on the spectrum and had a child that did not make it as a result of an associated co-morbid condition.  Autism Speaks and other organizations are working in support of research efforts that may eventually provide children like mine with a different outcome of life.  As I said earlier, people matter more than words.  There is no evidence that the word cure has ever killed anyone, but some co-morbids associated with the spectrum can provide an eventual result of death.  My child's death certificate is evidence of that.  A pretty good reason for a special interest, on or off the spectrum. 

 @Grayboy70 Actually, representatives of Autism Speaks have spoken SEVERAL times about their need to eradicate Autism.  They are also on record as refusing to accept anyone who is now high functioning, including adults with a significant case history of language delay, as being truly Autistic.  They are not willing to have any of us on their board of directors or an ANY positions that truly have any responsibility.  After YEARS of protest by Autistic self-advocates, they finally put ONE man with Asperger's on a scientific advisory council, where he is one of nearly 20 advisors with no real decision making power - and the man in question, John Elder Robison, is on record as wanting a cure for himself - a view that is absolutely REJECTED by the majority of adult Autistic self-advocates.   People do matter more than words - and the people who are part of Autism Speaks have proven, time and again, that they HATE Autistic people.

 @azautisticadvocate There are no weekly statistics recorded or kept, nationally, for murders of those with disabilities, only annual statistics provided for hate crimes, which include violence and murder against those with disabilities by the US census bureau and the FBI.  The "Autism Every Day" video was released on May 9th of 2006.  That year 772 hate crimes against those with disabilities was reported by the FBI. The following year in 2007, the number of hate crimes against those with disabilities fell to 762.  In the latest year available, 2010, the number has fallen to 397, almost 50% less than the number of annual hate crimes reported against those with disabilities in the year the "Autism Every Day" video released.  I suppose one could attempt to make the argument that the film release, over time, reduced the number of hate crimes against those with disabilities through greater awareness, support and prevention, for those that might commit those crimes, however correlation does not equal causation.  Those statistics are sourced from the FBI.gov site.  Autism Speaks, at the point in time the eradicating autism statement was made, the one and only time it was made by the founder's wife several years ago, was in reference to the symptoms of regressive autism, that her grandchild had, not in reference to Asperger's Syndrome.  The organization was not formed by the founder because of Asperger's syndrome, it was formed as a focus on Autism Disorder, more specifically regressive autism.  Since the time of that statement the organization has placed more focus on those less severely impacted by symptoms associated with the spectrum.  Autism Speaks makes it clear on their website that some individuals diagnosed with Asperger's syndrome do not have the same severe afflictions of those falling under the subgroup of regressive autism, and other subgroups with more severe issues, as some on the spectrum less impacted by the more severe symptoms and co-morbids have indicated they are looking for acceptance and support for accommodations in life, including the workplace, instead of remediation of symptoms.  It is clearly detailed in the section of Autism Speaks website that addresses "what it means to be on the spectrum", for millions of those in the general public that visit the website to become better informed of the diversity of the spectrum.  408 billion dollars was spent on research, in the US, reported by the IACC in 2010, that is in part,  focused more intently on those with regressive autism, and other more severely impacted subgroups on the spectrum, some of whom face the challenge of gaining self care skills in life.  Autism speaks contributed 18M, 4% of that total to research that year.  It would be inhumane to ignore the seriousness of the afflictions those individuals have and/or to disregard the potential of remediation of those symptoms, or if one wants to use a more emotional term, like the founder's wife did several years ago, eradicate those associated symptoms, such as gastro-intestinal illness and the loss of ability to communicate with others.  Significant clinical impairments in non-verbal communication and/or in developing and maintaining peer appropriate friendships has not been a mandatory requirement for a diagnosis of Aspergers syndrome, since that syndrome was introduced in the DSMIV in1994, as part of autism spectrum disorders.  Those two impairments will be a mandatory requirement for a diagnosis with the new DSM5 criteria for ASD.  Those that do not meet that new mandatory criteria can continue to personally identify with the term Aspergers, or a different disorder if diagnosed, but they will no longer be considered on the Autism Spectrum, by those professionals that create and use those mandatory diagnostic requirements, when assessed as such.  The only organization that is eradicating Aspergers syndrome for some, is the DSM5 organization.  The actual people previously diagnosed though, will still be around,  like the people receiving improved therapies and treatments for remediation of symptoms of regressive autism and other more severely impacted subgroups of autism, coming in part, as a result of research sponsored by Autism speaks and many other private and government organizations.  People matter more than words.:).

 @Grayboy70 The background rate for the murder of people with developmental disabilities is a regrettably high once per week.  The week that Autism Speaks released Autism Every Day, it spiked at FIVE that week.   Words MATTER.  Autism Speaks talks about ALL Autistics in a universally negative fashion.  To somehow claim that it doesn't matter if we are all characterized as severely affected and potentially dangerous is about as insensitive as claiming that people of African heritage should be referred to as obsolete farm equipment.  The language used by Autism Speaks in regards to Autistics IS equivalent to racist language.  You cannot eradicate Autism (as they repeatedly have said they want to do) without eradicating AUTISTIC PEOPLE.  This is the eugenics written in a modern context, nothing less.

 @azautisticadvocate Actually, in the specific statement from Dr. Sanders, from the review on NBC's Parenthood episode that was re-blogged on the Autism Speaks blog, where he used a version of a metaphor of a well known quote, in suggesting teaching people with Autism empathy is like teaching pigs to sing, as it annoys them, he put specifically in parenthesis (most of the time), so he was neither indicating that metaphor applied to either all people on the spectrum or all the time.  His quote is still referenced on the NBC site, and the Autism Speaks website.  It is a myth that Autism Speaks eats up most of the money that would otherwise be used for local community organizations.  The guidestar.org website provides funding revenue statistics for over 2000 non-profit organizations that assist in helping people on the spectrum in many different ways, with a search of the word Autism on that website.  My local modestly sized city of around 200K, as well as one of not a great deal of economic advantage, funds $4M annually to my local autism advocacy/support organization.  So, just that one local organization in that one modest sized and economic advantaged city, alone, generates close to 8 percent of Autism Speaks total annual funding revenue in 2011 at 55M.  That's an average donation of $20 per person yearly.  If extrapolated out to the population of the US,  just per potential of private local autism advocacy/support organizations, the figure would represent close to 6 Billion dollars, nationwide in the US.  Total support costs in the US for Autism Spectrum Disorders are estimated at 38 Billion dollars annually in recent peer reviewed research.  I agree that local charities provide a greater percentage of their funding for local causes, and as of yet have not addressed local charities in this discussion, but they do not have the same missions, goals and expenses of nationwide/global advocacy/research organizations.  I personally agree that it's a priority to give to local charities first, for those that can afford donations, regardless of the charity involved.  Per statistics provided by the US Census bureau the murder of those with disabilities dropped substantially through the course of the decade in which Autism Speaks was founded.  There is absolutely no evidence that the murder of those with any type of disability has risen in the last decade, for any reason, in fact evidence to the contrary.  One might expect some statistical increase with the increased statistical prevalence of diagnoses of Autism Spectrum Disorders, but that is not even an evidenced factor. Autism Speaks has never been quoted in any of their literature or PSA's in stating students on the spectrum are dangerous to others.  The organization certainly cannot be held accountable for misinformation provided by people in the general population that has nothing to do with Autism Speaks.  The information the organization provides is sourced through third party references, commonly provided on the websites of hundreds of autism advocacy/support organizations local and national.  To date most of the general harm generated about Autism Speaks, has been unsubstantiated claims that have gained urban myth status, that do more general harm in deconstructive divisive efforts in the full autism community, than any actual evidenced miss-step toward perceived offensive by some from the two historical videos, no longer available through the Autism Speaks organization.  As far as Autism Speaks fundraising efforts go, there has been no evidenced negative impact; ironically potential free advertisement as the organization is often a center focus of topic of pros/cons highlighting "Autism Speaks" brand name recognition in online autism communities.  The organization raised 10% greater funding last year as opposed to the previous year, which is positive, as it provided the organization the ability to fund a half million dollars more in family service grants than the previous year.  I personally would rather hear about the good things that the "small"  local organizations are doing, but there is rarely ever any focus in that area, in online autism communities, that does provide most of the actual direct support to individuals on the spectrum, in total efforts nationwide, in comparison by an almost astronomical figure, that can easily be evidenced on the guidestar.org website, through the over 2000 Autism associated non-profit support organizations listed there.  That's positive information worth repeating:).

 @Grayboy70 "Context" only matters so much.  The way in which the doctor used his phrasing implied that it applied to ALL Autistics, all the time, a false assumption on his behalf.    As for the simple "amount" donated by Autism $peaks, it will of course be higher in dollar amount, because of the fact that they eat up all the donations that would go to other Autism organizations as well.  I always ask people who would like to give donations to give them to organizations that devote MOST of the money to services, such as the local charity here, CITT - Child Improvement Through Therapy.  Over 60% of their money is used to help parents pay for speech, occupational, and other therapies that are proven to help children.  It's not Autism-specific, but since an increasing number of the parents who need to use these services are parents of Autistic children, a lot of the money that is donated will end up helping actual Autistic people.      Additionally, there is the matter, you are completely ignoring, of all the ACTUAL HARM done by Autism $peaks.  I help run our local support group for Autistic adults, and I hear stories, every year, about how "information" supplied by Autism $peaks ends up hurting us: like the young man who was denied entrance to college after asking for accommodations for his Autism (after previously having been accepted), because the Disability Resources Services quoted Autism $peaks as saying he would be potentially dangerous to the other students.  The uptick in MURDERS of Autistics by their parents and caregivers after the release of "Autism Every Day" and "I am Autism" are UNFORGIVABLE.

 @azautisticadvocate The story in the Autism Speaks blog, was linked from the NBC website, from the April 19, 2011 TV show  "Parent Hood".  Roy Sanders has been providing an expert medical opinion on the NBC website for this show, for years now.  The quote used about teaching singing, is not meant to literally compare people on the spectrum with pigs; it is a famous decades old quote from the Science Fiction writer, Robert Heinlein, commonly used not unlike the metaphor "when pigs fly", but unfortunately some people were not aware of the context of the famous quote, and it was a poor choice of a quote considering that some people listening in on the conversation might have difficulties understanding it was not meant to be taken literally.  The context Roy Sanders was referring to was with Max, the girl with Asperger's Syndrome, on the TV show Parenthood that had difficulty in the 4/19/2011 episode sharing feelings with her friend Sarah that was upset about someone else being ill in the hospital.  It is typical, but necessarily applicable to you or your friends, for some people on the spectrum to not share a similar emotional experience of grieving associated with empathy with others, when the situation does not directly impact them, which is not a spectrum specific phenomenon.  Mr. Sander's use of the commonly used quote from Robert Heinlein, was in acknowledgement that one cannot expect all on the spectrum to change their response to grief, if some do not experience it in the same way, as it would most likely be annoying if someone told them they had to learn to share tears on demand among others experiencing grief.  This does not mean that all or most on the spectrum are not capable of having a great deal of compassion, including strong feelings of emotion associated with sympathy, when in the presence of someone or an animal actually experiencing pain and suffering, that they personally care about.  Again, 2 million dollars is the amount of money that Autism Speaks contributes for family service grants, which is the highest amount of money provided by any national autism advocacy organization, by far, as opposed to the same 4% provided by the second most well known national autism advocacy organization, the ASA, at 145K.  Perhaps, ideally, all National Autism Advocacy organizations should give much more, but never the less, Autism Speaks is the evidenced leader in this area, in the US, as all the IRS form 990's are available for public review..