03 July 2012

How Autism Speaks Must Change

Editorial note (February 2014): I became aware that my original phrasing in this post, in disavowing the HIV/AIDS community, was a reflection of disability hierarchy, just as when physically disabled activists say their minds work fine or when autistic activists say they don't have intellectual disabilities (aren't "retarded") or aren't mentally ill as part of horizontally ableist attempts to validate their own identities. My original wording demanded that Autism Speaks apologize for dehumanizing and offensive language, including comparisons of being autistic to having AIDS. That was wrong, and I would like to apologize to any people who are HIV-positive or have AIDS who were re-traumatized or hurt by my original language in this post. 

To those who find my criticism of Autism Speaks too harsh, and to those who insist or are resigned into accepting that Autism Speaks will always exist and must change rather than disappear, if Autism Speaks were to make an absolute sea change, I would accept it under the following terms and no less:

1.) Adopt a community-based participatory research model for all grant review. Specifically, at least 55% of all scientific advisory boards and grant review panels must be comprised of Autistic people (who can sometimes also be parents, professionals, or researchers), while the remaining members may be non-Autistic family members, professionals, and researchers. Furthermore, these boards and panels must have actual decision-making power.

2.) Autistic people must be meaningfully represented and included throughout the organization's leadership. Specifically, the national Board, all local or regional Board, and all advisory councils must meaningfully include Autistic people as at least one-third of the members or appointees at a basic minimum, with the targeted number at 55% representation. Those members must have equal decision-making power as non-Autistic members. Furthermore, Autism Speaks must hire competent and qualified Autistic people at all levels of the organization, from entry-level positions to the top ranking executive positions, without regard to communications differences, and these people must not be tokens, but must have legitimate decision-making power. Additionally, Autism Speaks may choose to create a supplementary advisory committee comprised entirely of Autistic people, provided that that body has meaningful decision-making power.

3.) Research priorities must shift toward the needs and desires of Autistic people. Specifically, funds set aside for research must be allocated toward research on topics such as integrated and inclusive education, integrated and supported employment, supported and independent living, access to healthcare, sensory integration issues and therapies or coping mechanisms, augmentative and alternative communication, discrimination in employment and housing, postsecondary and workforce preparation and outcomes, person-centered and individual-directed transition planning, and abuse of Autistic people by caretakers and service providers. Furthermore, research that focuses on identifying the etiology or specific genetic causation of autism, environmental "risk" factors, development of a prenatal screening, or recovery or cure should not be pursued as this is not research that will benefit the millions of Autistic people alive now, many of whom do not want to be cured, including many Autistics with very significant disabilities. Research that focuses on improving quality of life and removing barriers to access should become the only priority.

4.) Materials produced by the organization must only provide accurate, positive, and objective information. Specifically, any fundraising campaigns, public service announcements, informational sheets, or other materials must focus on acceptance and understanding of Autistic people instead of framing our lives as tragedy or pity narratives. Materials must move away from exclusively deficit-based language, fear-mongering statistical comparisons or analogies, or otherwise dehumanizing or othering language. Additionally, Autistic people must be consulted and meaningfully included throughout the development of any fundraising, promotional, or informational materials. Furthermore, Autism Speaks must apologize for previous dehumanizing and offensive language in organization-sponsored public materials, including the rhetoric used in "Autism Every Day," "I Am Autism," and the constant comparisons of the likelihood of being Autistic to the likelihood of a child dying in a car crash, being struck by lightning, or otherwise dying. Additionally, Autism Speaks must repudiate all remarks that appear to lend credence to the debunked vaccine-causation myth.

5.) Advocacy priorities must shift to those accepted and pursued by mainstream disability, disability rights, and self-advocacy organizations. Specifically, advocacy must focus on establishing policies and practices at both the national and local levels that promote equal access and opportunity for Autistic people in education, employment, housing, healthcare, and civic and community life, which is often achieved by varying levels of supports and services appropriate to each individual. Regardless of whether Autism Speaks takes a more "activist" role in this sense, funding allocated toward advocacy must be reviewed and approved by Autistic people. Furthermore, Autism Speaks ought to be supporting measures to end segregated education, restraint and seclusion, aversive punishments, inequity or inaccessibility in healthcare, sheltered workshops, or institutionalization.

6.) Autism Speaks must undertake an effort to reform its finances and budget. Specifically, executives and employees must be paid fair wages commiserate with their qualifications and duties, and with consideration that the organization is a non-profit, not a private corporation. As few funds as possible should be allocated toward fundraising, as the majority of funds ought to directly support and benefit Autistic people.

7.) The organization must partner and collaborate with national and local cross-disability and disability organizations in order to promote research, programming, and advocacy that align with the priorities of Autistic people, as expressed by such established organizations as TASH, the Autistic Self Advocacy Network, and the Autism National Committee. Furthermore, the organization must make all effort to educate its employees, members, and volunteers as to both the changed priorities and practices, and the reasoning behind them.

Until all of these things happen, I will never be able to withdraw my indictment of the organization. I am willing to talk to whomever will listen, but I will not forget the repeat offenses that Autism Speaks has accumulated. Autism Speaks has the opportunity to make a sea change in its philosophies, policies, and practices, but a partial reformation will be no reformation.

94 comments:

  1. Good!

    You have formulated the surrender note, all the conditions non-negotiable. And you have stated that "until then..." you will fight.

    You picked the battle, and it is a Grand One.
    Now is the time to rally the troops.

    Vorya Yarow,
    At your service

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  2. I tried to comment before. The point I was trying to put forward being pretty important in my eyes, I shall do so again.

    Whilst I consider Autism Speaks to be an all or nothing proposition, that is, anything less than the revocation of their tax exemption and the declaration of certain of their activities to be criminal is not going to get us anywhere. Whether they believe it or not, their actions in the media and in the solicitation of celebrities to champion them have been deceitful (eg. Tommy Hilfiger clearly does not know what people on the spectrum really think of them). Given that money changes hands on a constant basis as a result of that deceit, a case can be made that they maliciously engage in fraud.

    I would therefore be pushing for the complete removal of all of its members who engage in any decision-making or fundraising. Every last one of them.

    I also believe that the Wright family should be removed from the organisation, and told their yaps must never open to the public on the subject of autism ever again.

    Both groups should be told they could face criminal charges for violations, because that is exactly what would happen if a "charity" soliciting money for cancer or diabetes were to behave in the manner that they do.

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    1. Argh. I forgot to close up one proposition in my comment. I was going to say Whilst, blah blah blah, ... the list of things Autism Speaks has to do in order to have their existence accepted rather than desired to end should also ideally include... and so on.

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  3. 1 & 2: You are setting a standard for autism speaks, that they could not possibly comply with. There are no individuals reported diagnosed on the Autism Society of America Board of Directors that both you and ASAN endorse. It would be against the law per privacy laws in the US, to disclose medical diagnoses for individuals diagnosed with Autism in either organization. Autism speaks has already reported in an interview provided on the Wrong Planet website that individuals diagnosed with autism work in their organization, however they cannot legally provide names, unless those individuals want to disclose that information, which they don't. There are several individuals on their board of directors that report they are parents of autistic children. There are likely many individuals on the broader autism phenotype that work in their research division.

    3. Autism Speaks does not provide funding for research into a prenatal cure for autism, as evidenced on their website, per the research they fund. They also provided that information in the referenced interview above, specific to that issue. The organization is already addressing many of your points per research, clearly identified on their website, where research goals and funded grants are identified. Cure is not even part of the nomenclature of their current year research restrictions and goals.

    4. One cannot expect any charitable organization to provide information on a disorder that does not reflect the negative realities of that disorder, and hope to gain support for a mission to address the disorder. That's not a reasonable request nor does any other charitable organization do this. The organization removed those videos that are continually referenced several years ago from their website, and apologized for missteps as a young organization in the interview referenced above, easily found with an "autism speaks interview" search in several threads on the Wrong Planet website.

    5. Autism Speaks already works to support individuals with autism on the national legislative scale and have been successful in providing a great deal of advocacy in insurance reform to support individuals with autism, as well as many other efforts. As stated before they have individuals with Autism working in their organization, whom assist with efforts, whose diagnoses cannot be disclosed per privacy laws. Same as any other employer in the US.

    6. Autism Speaks CEO salary meets the median standard for large non-profit charitable organizations in the North East, per the respected Charity Navigator organization that also provides the organization 3 out 4 stars, the same rating the Autism Society of America receives, per financials and accounting transparency. In fact that is the highest overall rating provided to any autism advocacy organization rated by that watch dog group.

    7. The organization cannot reasonably change their mission goals in alignment with other autism advocacy organizations. No one organization can meet the needs of all individuals with autism spectrum disorders. There is no way that ASAN is going to be able to fund research for GI disorders in autism, and there are mission goals associated with ASAN beyond the scope of what Autism Speaks does. But that is fine as long as the needs of individuals with autism are met, no matter how many organizations and different missions are required.

    Finally, Autism Speaks already meets or exceeds most of the standards you are asking for as compared to the ASA organization, that both you and ASAN endorse. This is an evidenced fact, that is ignored on the Autism Speaks fact sheet on the ASAN website.

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    1. There is a difference between working in and having decision making power. And of course they've got to talk about reality- but reality is not 100% negative, and that's how they like to paint it. Challenges AND benefits: not one XOR the other. Comparing autism to diseases that kill is not and will never be accurate.

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    2. Anon - I think you're missing the point of Lydia's criticsm: that AS, of all organizations should understand - autistic voices and perspectives should be heard. Autistic individuals should have equal representation and equal opportunity to speak about the decisions being made about them and for them. That AS has an opportunity here to change and grow to better respond to autistic needs is not something to fear or fight.

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    3. As a lawyer I can't let this go by.

      There are no legal restrictions on disclosing whether members of your board of directors are on the autism spectrum. Of course, if you disclose a board member's diagnosis without their consent, they might quit being on your board. But there's certainly no law against it. And certainly nothing is stopping Autism Speaks from putting people on their Board who are happy to be open about their diagnosis.

      In fact, Autism Speaks *does* have one "out" Autistic person on their board. If they can have one, clearly they can have many more if they choose. The majority of ASAN's board are people who are openly autistic. So is the majority of the boards of every organization in the National Disability Leadership Alliance (and another of the NDLA organizations - Self Advocates Becoming Empowered - is run by people with intellectual disabilities). It's completely possible.

      Whether people on the autism spectrum "work for" Autism Speaks is completely irrelevant. If you were to actually read Lydia's post, the issue is about leadership: who sets the organization's priorities? Who decides where it spends its money? Who decides what kinds of public announcements make, and what kind of campaigns they put on? Not the miscellaneous autistic people who work in the office, and also not any researchers who may or may not happen to be on the autism spectrum (You might think researchers have a lot of power, but honestly they don't. They rely on organizations for funding and their research priorities and even the language they use in their papers are often influenced by who's funding them. This is just a fact of life, something any scientist will gladly vent to you about if you ask them).

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    4. (to clarify - every organization in NDLA has a board the majority of which is made up of people with disabilities who are open about that fact. Not people who are open about autistic - that's just ASAN. For example, SABE's board is made up primarily of people with intellectual disabilities, whereas Little People of America's board is made up primarily of Little People. AAPD's board is made up primarily of people with a range of disabilities.)

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    5. Anonymous states:

      "There are several individuals on their board of directors that report they are parents of autistic children".

      You mean like Alison Singer? Founding member and former VP of the organization?

      http://www.youtube.com/watch?v=C7NTfZzS9b8

      Hey, at least she has an autistic child, so that's good enough - that she talks openly about wanting to murder that child isn't important, because hey, she's got a connection to Autism at least.

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    6. "It would be against the law per privacy laws in the US, to disclose medical diagnoses for individuals diagnosed with Autism in either organization"
      But you already have a token member: John Elder Robison.
      So this apologist is admitting that by his own logic Autism Speaks is breaking the law.

      "There are no individuals reported diagnosed on the Autism Society of America Board of Directors that both you and ASAN endorse"
      We know Autism Speaks has stiffly resisted all attempts at change by ASAN. That doesn't mean it is ASAN's fault that you arrogant refuse to talk with the Autism community.

      "One cannot expect any charitable organization to provide information on a disorder that does not reflect the negative realities of that disorder, and hope to gain support for a mission to address the disorder"
      So you're openly telling all the Autistics here despite all their collective experience that they are wrong and you are right about what they are. A typically narcissistic bigot.

      "Finally, Autism Speaks already meets or exceeds most of the standards you are asking for as compared to the ASA organization, that both you and ASAN endorse. This is an evidenced fact, that is ignored on the Autism Speaks fact sheet on the ASAN website."
      Except that you have just denied all of the standards just above by making poor excuses and then you make no references to any of the standards made or even where ASAN said anything. And even if you were to provide links I wouldn't expect them to say what you tell us they say either. That's the problem when you cry wolf.

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    7. @alyssa, comparing statistics of disorders/diseases is not a comparison of the severity of the disorders/diseases. Those are statistical facts of prevalence not severity.

      @whoselaw, some of those board directors of autism speaks are employees of the organization and are covered under ADA laws that prohibit disclosure of medical information. None are required to disclose medical information. The board of directors are selected based on their qualifications, not on disability.

      Your analogies are not equivalent ones, as they are based on organizations run by individuals with disabilities, by intent of excluding those qualified without disabilities in the hiring or appointment process. The Autism Society of America, a relevant analogy, which ASAN openly supports on their website, while criticizing autism speaks on the same fact sheet for this, has no one with a disclosure of autism on the board of directors; they all must meet qualifications per appointment, not restricted to disability.

      @Brian G., nice try but that individual resigned several years ago, Autism Speaks has 8 board members who disclose they have children with autism spectrum disorders. http://www.autismspeaks.org/about-us/board-directors

      The autism Society of America board of directors, that ASAN endorses, has one member that discloses they have a child with an autism spectrum disorder http://www.autism-society.org/about-us/board-advisors/board-of-directors.html

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    8. Her resignation was completely unrelated to her statements - Autism Speaks has not apologized for her statements, nor overtly distanced themselves from them, nor changed the ideology they began with since she left.

      All those other board members supported and publicized her statements. My point is that it's the ideology, actions, and words used - and if they are wrong, they are wrong, and I just do not care if they have autistic children of their own, if they were founded on an ideology that was willing to broadcast to the world one of it's founding members talking about murdering her child.

      I'm not saying they all feel the way Mrs. Singer felt when she said it, nor that they do not love their children. I am saying I really do not consider them having autistic children to give any credibility to the organization based on their ideology; just as I'm not going to give Mrs. Singer's statements sympathy or credibility simply because she has an autistic child - after all, having that child did not give her a compassionate view toward autistic people (if anything, Autism Everyday is about the parents, not the children).

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    9. @anon; John Elder Robison, publicly disclosed he had an autism spectrum disorder well before he was appointed to Autism Speaks Scientific Advisory Board. Board members whom are employees of autism speaks, are protected under the ADA, per medical disclosure, but they can certainly volunteer that information if they like. Autism Speaks has no legal authority to seek medical information on any of the other board members, nor does any health agency have the legal authority to release that information to autism speaks, under the HIPAA privacy act. One could certainly understand why an individual with autism would keep that disclosed considered the number of individuals that have made disparaging remarks against John Elderson Robison minimizing his potential influence on that board by calling him a token autistic. Including ASAN whom one would think would give him some level of respect for his contributions to that organization's research direction.

      ASAN and autism speaks have two different missions, Autism speaks certainly is not requesting ASAN to mirror their mission goals. It would not be reasonable if they did. The same applies to any other organization attempting to require other organizations to mirror their missions.

      I'm diagnosed on the autism spectrum disorder, and you automatically consider me a narcissistic bigot because I recognize the negative issues that some people with autism struggle with. I've had a life of challenges, but I eventually adapted to speak, gain independence, buy a home, and have a family. I've worked with those much more severely impacted by disabling aspects of autism, well before I understood I had any diagnosable condition. I clearly recognize that I was much more advantaged than some others, per my ability to adapt.

      I'm interested in Autism Research, in part, because of the research Autism Speaks is funding now, evidenced on their website extending out to the adult population of individuals with autism, as well as reaching out on a global basis for greater awareness in other countries, that have little information on Autism Spectrum disorders.

      I look at facts, hyperbole doesn't impress me, either in a negative or positive way. And I consider myself just another part of humanity regardless of what deck of cards I was born with.

      I can make all the references you like backing up all the facts I have presented. Which point do you disagree with? All the evidence is clearly provided on the Autism Speaks website, the Charity Navigator Website, the ADA, the HIPAA, the wrong planet website for the interview with autism speaks, as well as the fact sheet on the ASAN website about Autism speaks that criticizes the organization for meeting the same financial/accounting transparency standards under the Charity Navigator organization, as the ASA on that same fact sheet that they endorse. All extremely easy to find with a search on a google, but if you want the actual links, I can provide that in another post, with no problem.

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    10. Ms. Singer, since that interview has publicly apologized for not making her statement clearer that her thought was an irrational one, not unlike other irrational thoughts human beings make when under a tremendous amount of stress. The organization received constructive criticism and removed that video from their main website, as well as the "I Am Autism Video". Since then they have publicly apologized for making missteps as a young organization, that anyone may have been offended by, in this link: http://cdn.wrongplanet.net/postxf175264-0-0.html&sid=7023304607b0224032fb8268bc3ead0c

      They also refute many of the urban myths associated with the organization in that interview, that continue to be circulated on the internet.

      The point is, that huge autism advocacy organizations that depend on marketing and public donations to fund efforts to help individuals, require executives and board members that are highly skilled in social communication, to deal with issues associated with fundraising. It's part of why one sees that type of talent in the board of directors in large charitable organizations, equivalently in autism speaks and the autism society of america, as well as any other large charitable organization that relies on a huge fundraising effort.

      However. in the case of Autism Speaks, the skills associated with the broader autism phenotype are certainly within the realm of scientific research, the major aspect of Autism Speaks mission, from those in the scientific advisory board to the individuals that do independent research, with an attempt an attempt to keep bias out of the equation.

      In fact ,Michelle Dawson an individual that is part of a research group comprised of individuals diagnosed with autism spectrum disorders, is reported to have received close to half a million dollars in support for that group's research efforts headed by Lauren Mottron, funded by Autism Speaks. Autism Speaks is not evidenced as discriminating in their selection of the most qualified individuals that do research regardless of ideological differences, nor are they evidenced as discriminating in their hiring practices to hire or appoint those with the qualifications required to successfully fulfill the duties of board member or employees.

      I was pretty fortunate in adapting to life, as an individual diagnosed with autism, but I can't imagine attaining the credentials among the board of directors of either organization, and know of no individual actually diagnosed with an autism spectrum disorder coming close to meeting those type of required credentials, given that they would even be interested in taking on a responsibility, where skills in social communication at the highest levels, was required.

      Bill Gates doesn't count. :) He's never disclosed that he has been professionally diagnosed with any disorder, however he does have the type of credentials that would reasonably be required for a board member in an organization as large as Autism Speaks or the Autism Society of America. Those on the broader autism phenotype extend out potentially as far as 30 percent into the population, per research done in the US and Sweden; not much doubt Bill Gates is part of that broader phenotype, but again, no evidence of a professionally diagnosed disorder. :)

      The interview, linked above with Autism Speaks, was dismissed from the Aspies for Freedom website as conflicting with that site's reluctance to try to understand Autism Speaks mission, however the organization's mission has been reasonably discussed on the Wrong Planet website, with no respectful viewpoint censored, as appears to be allowed here on this blog.

      I attempted to discuss the issue, respectfully on another blog with an individual that is associated with the ASAN organization and was not even provided an opportunity to do so, as my opinion was immediately censored. I respect the individual who is offering their opinion on this website, for allowing alternate viewpoints, and referenced facts.

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    11. @Brian, Ms. Singer has since offered an apology for not making it clearer in that video that her thought was an irrational one, and the autism speaks organization has removed the video from their website, in response to constructive criticism and made a public apology for missteps made as a young organization that may of offended others, at this link: http://cdn.wrongplanet.net/postxf175264-0-0.html&sid=7023304607b0224032fb8268bc3ead0c

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    12. "As a lawyer I can't let this go by."

      Please provide me with the name of either your good self, complete with legal qualifications and such so I know exactly what information is necessary to check if it is you, or the firm that you work for. Because I have no wish to hire either by accident.

      Maybe you missed this, but a lot of what Lydia Brown has asked that Autism Speaks do in order to meaningfully change is the expected norm for charity organisations. Surprised? Well, if you are, you have proven my point.

      If a charity purporting to represent the percentage of the population that actually *suffers* in the true sense of the word from diabetes or cancer (I live with both by the way) were to act so contrary to the interests of that percentage of the population, a serious legal challenge to its right to exist would take place. Words like fraud, false representation, or even misconduct would be used. And I happen to know this in spite of never having been anywhere near the law sector of any university. Is having experience of what charities do and how they work in the real world not grand?

      All it would take, mister lawyer sir, for a very concerted legal challenge to Autism Speaks' right to even exist to occur, is a rewrite of laws that is autistic-inclusive. That is, the Combatting Autism Act be thrown out and held up as a very bad mistake, and replaced with something that defines autistic individuals as people with rights and feelings. Names like Autism Civil Rights Amendment or Autistic Individuals Are People Too come to mind as the name for the act. (This, for all who care to read my commentary, is something we should be urging the government to do here and now, especially whilst America has a President who does not have his head so far up his clacker.)

      Oh, and in closing, Ms. Singer can apologise until the cows come home and metamorphose into Greek renaissance-era Sirens. It will not make a bit of difference where militants like my good self are concerned. Autism Everyday, and the fact that Autism Speaks still engage in the same activity they supposedly have apologised for, are classic examples of the fact that Autism Speaks have done far too much excreting where they eat than any charity organisation should be allowed to.

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    13. @stillfinditsohard:

      The American Psychiatric Association, APA, generates millions of dollars a year through the sale of their copyrighted DSM criteria that describe mental disorders, of which autism spectrum disorder is listed under the classification of neurodevelopmental disorders.

      For the government to list individuals with one out of hundreds of other disorders in a psychiatric manual, as having minority status over other individuals with DSM defined mental/neurological disorders such as schizophrenia, ADHD, or developmental cognitive deficits, would not be reasonable per any legal precedent.

      Whatever autism is, changes, per whatever method the American Psychiatric Association sees fit as determining what constitutes the disorder, as a collection of criteria determined and described by the professionals that currently constitute the DSM5 working groups.

      While no one is stopping anyone from associating their identity with Autism Spectrum Disorder(s) that the APA defines, Autism Spectrum Disorder(s) are defined by the EEOC as a disorder(s) that is/are inherently a limitation of brain function listed in US code as consistently resulting in disability per ADA definition.

      There is no legal precedent for individuals diagnosed with Autism Spectrum disorder(s) to receive any special legal rights above and beyond any other ADA defined disability.

      There is no legal potential for individuals with Autism Spectrum Disorder(s) that identify with the term autistic to receive any special legal consideration above and beyond that of an individual with epilepsy or schizophrenia that identifies with their disorder as an epileptic or a schizophrenic.

      But again, the freedoms allowed in the US, certainly allow anyone to identify with a disorder they are diagnosed with if they choose to.

      Above and beyond this, there are several thousands of individuals identifying themselves as individuals diagnosed or self-diagnosed with autism on the internet that have voiced negative opinions against autism speaks in the last several years, but there are very few of these individuals that are actually validated as having an autism spectrum disorder.

      Meanwhile, there is an estimated 1.5 million individuals diagnosed with Autism Spectrum disorders in the US. There is no group of officially diagnosed autism spectrum individuals on the internet, providing anywhere close to even a significant opinion of 5 percent of that 1.5 million estimated population of diagnosed individuals with autism in the US.

      Autism speaks intent is to help individuals whom struggle with a medically defined disorder, not limited to the 1 in 88, 8 year-old children identified by the CDC in classes for the disabled across the US. Their mission is not associated with whether or not people identify themselves as that disorder. This is consistent with the missions of epilepsy foundations, cancer foundations, diabetes foundations as well as hundreds of other foundations. All legally defined in the same category as Autism Spectrum Disorder(s), when assessed as disability under the ADA.

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    14. Anonymous said: 3. Autism Speaks does not provide funding for research into a prenatal cure for autism, as evidenced on their website, per the research they fund. They also provided that information in the referenced interview above, specific to that issue. The organization is already addressing many of your points per research, clearly identified on their website, where research goals and funded grants are identified. Cure is not even part of the nomenclature of their current year research restrictions and goals.
      That may be true currently, but Autism Squeaks are funding research into finding the combination of genes that Homo sapiens autistica apart from other humans, and you know once that's been achieved, then 'autism amniocentesis' tests can be developed. Don't be so disingenuous.

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  4. It is an evidenced fact that only a minority of individuals with autism spectrum disorders express opposition to anything associated with autism speaks. There may be a few thousand voices on the internet expressing opposition but there an estimated 1.5 million individuals with autism spectrum disorders in the US. Autism Speaks most recent walk for donations in Silicon Valley was volunteered by close to 7,000 individuals that collected nearly a half a million dollars to support autism speaks mission to help individuals with autism.

    The organization has 340 thousand volunteers reported on their 2010 form 990, and has an average of one charitable walk every other day across cities in the US, collecting millions of dollars from additional millions of individuals that support the organization. These are evidenced documented facts.

    While autism speaks receives this free advertisement for name recognition among those on the internet that do not present evidenced facts for accusatory statements against the organization, there are thousands of other organizations that merit positive comments associated with other missions to help individuals with autism, rarely gathering any mention on these blogs and sites. They could use the free advertisement.

    Instead negative attention, resulting in the net effect of brand recognition, is focused on the one organization that continues to get most of the media attention, and is overwhelmingly supported by the American public both those with autism and without autism, and seen as a stellar example as a reputable charitable organization.

    It's basically additional free advertisement for brand recognition for the autism speaks organization. From the responses provided here, the accusatory statements are easily debunked. I'll have to give you credit that you provide one of the few blogs, brave enough to accept constructive criticism rather to immediately censor any comment that doesn't fit within one point of view.

    My suggestion is to do the research before presenting accusatory statements against the autism speaks organization that is easily be debunked by others.

    I've enjoyed your other well reasoned articles, but the autism speaks articles come across as some type of personal vendetta against a charitable organization, which is not reasonable, when there is no evidence the organization is guilty of any nefarious activities, as evidenced by third party groups that monitor charitable organizations.

    And as far as Autism organizations there are some great ones out there, that could be focused on in a positive way in a blog rather than this continued focus on the evidenced most popular autism advocacy organization, nationwide and world wide, that ironically is provided a great deal of free advertisement per brand recognition by those that don't present reasonable evidence that the organization has done anything wrong.

    Not just focusing on your efforts, but I'm sure that autism speaks would miss all this free brand recognition, if more people focused on other organizations, rather than providing a controversy/drama, that draws in more brand recognition for autism speaks. Would be one thing if the negative tone could be evidenced, but most every article on the internet about autism speaks, in balance ends up making the organization look like the good guy that is being abused, per reasoned conversation.

    The Mayo clinic received a one star rating by the Charity navigator organization and they are still one of the most respected organizations in the US. Autism Speaks has them beat in every category of third party analysis.

    You seem like a very nice person. Good luck to you.

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  5. I'm sorry, but it's thanks to Autism Speaks and the way they depict Autistic individuals (without giving said individuals and chance to speak for themselves about what their experiences are), that we are now seeing the "r-word" being replaced with "autistic" as a would be "insult".

    It's thanks to Autism Speaks and the misinformation they disseminate about Autism as a tragedy that parents who are new to the game become paralyzed with fear and grief, instead of being more able to accept the diagnosis and seek positive ways of engaging with and helping their children - as we all know, early intervention is key. A lot of kids don't get that due to the "mourning/denial" period most parents go through.

    If I had known then, what I know now, I know my son would be much further along than he is now, and our whole family would have suffered less if only I had had "heard" the voices of the Autistic community sooner. My son was diagnosed as borderline severely Autistic and was non verbal. He is now verbal and considered "high-functioning". Where he is on the Spectrum bears no meaning to his experience.

    I know many adult Autistics who are nonverbal and would be considered "low-functioning" and they still live rich, full and happy lives. Happy until they encounter the ignorance from NeuroTypicals who see them as a problem or are condescending and patronizing towards them. What the world needs now is more organizations that include the voices of Autistic people. As the saying goes: "nothing about us, without us".

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  6. This is quite ridiculous. Should we forgo having trained scientists doing the scientific research because having an untrained autistic person is better? Should scientific research that may cure and prevent the suffering of people just be thrown away because it isn't PC to the autism advocates? And what kind of fundraising are you going to have playing up the false idea that autism is all happiness, unicorns and sunshine. Oh I'm sure lots of people are going to donate to support an organisation whose message is, "Autistic people are wonderful and better than you so give us money." There are organisations like ASAN that do the advocacy part, AS has always been focused on research, both part are important. What you propose is that AS just disbands or turns into ASAN which will make it as irrelevant as ASAN and set autism research back decades.

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    1. There are actually Autistic people who are trained as researchers and scientists, including in the autism and disability fields. For example: Dr. Stephen Mark Shore, Dr. Temple Grandin, Dr. Melanie Yergeau, Dora Raymaker, Alexander Cheezem, Michelle Dawson, Steven Kapp, Scott Robertson, Rachel Cohen-Rottenberg, Nick Walker, and Amy Frechette. Feel free to Google any of these people. And for the record, there are many other Autistic researchers and scientists whose names I simply don't remember.

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    2. Don't worry. Anonymous' apparent belief that Autistic people aren't capable of being "trained scientists doing scientific research" is probably a large part of the reason why s/he is anonymous in the first place.

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    3. By the way, we in the neurodiversity movement do not believe that autism is all rainbows and sunshine. We accept and understand intimately, BEING Autistic, that we experience disability. In fact, many Autistic people who support neurodiversity and organizations like ASAN experience very significant disability. Some of us have multiple disabilities, co-occurring medical or health problems, and have had significant trouble with education, employment, and housing. Neurodiversity, furthermore, does not posit that Autistic people are better than non-Autistic people, but rather that being Autistic is an EQUALLY valid way of living and experiencing life as being non-Autistic. Yes, Autistic people suffer. That suffering, however, is not because we are Autistic. It is because of the attitudes of people like you.

      BTW, you may wish to read the following paper. It may elucidate you on your backwards and misguided views.

      Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2012, April 30). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology. Advance online publication.

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    4. "What you propose is that AS just disbands or turns into ASAN which will make it as irrelevant as ASAN and set autism research back decades."
      You spin research in to elimination and constant drug use in to something sounding beneficial, like happiness and faries. I have nothing against stopping kids from having seizures, but seizures ARENT autism.

      "Should we forgo having trained scientists doing the scientific research because having an untrained autistic person is better?"
      Yes, I do think a patient will be able to tell if they are sick or not from what information a doctor tells them. The dictates of a psychotic anthropocentric dogma do not constitute good evidence that I am sick, and your overweening self-righteousness speaks for itself. You would trample on us and claim to help us.

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    5. @Lydia, the survey data in the research you linked appears to use biased methodology, per points below:

      1. The researchers “recruited participants from their own social networks and e-mail lists and asked their contacts to redistribute the survey invitation” (in addition to other sources). Internet surveys aren't very reliable to begin with, but asking one's friends and family to participate in a survey appears to be an unusually biased method for a survey, particularly, when one of the researchers is a member of ASAN, where most everyone is on the same sheet of music for the neurodiversity ideology.

      2. The male-female ratio is not evidenced as sampling the evidenced gender ratio associated with autism per 69.5% females in the ASD group and 88.2% in the “undiagnosed” ASD group. That is a 4 to 1 female to male ratio, reversed from the evidenced male to female ratio of ASD's. And not too surprising per the social network used, since one rarely sees a young adult male participating in you tube videos of ASAN protests against Autism Speaks, if this is any indication of the ratio of female to male associations in the ASAN social network.

      3. Both of the ASD groups had a mean level of education that included some college education. This demographic sample is not representative per full spectrum studies on those whom have education at the college level, ranging from 14 to 35% depending on which peer reviewed study one looks at. But it does seem representative of the ASAN demographic, where internships and job opportunities have only been offered to those with college level education.

      4. A little over 25% of the total autism group were self-diagnosed. Not a valid measurement for autism in a scientific study.

      As much as Autism Speaks is scrutinized by the ASAN organization for the demographic of it's board of directors, it seems possible that ASAN could do more to recruit young adult males on the spectrum in active participation as well as the majority of individuals evidenced in the full spectrum of autism, who do not attain a college level of education.

      The link and excerpt below from research recently done in Sweden provides what appears to be an analysis of "Neurodiversity", not subject to the potential bias of the study you linked.

      "The neurodiversity claim contains at least two different aspects. The first aspect is that autism, among other neurological conditions, is first and foremost a natural variation. The other aspect is about conferring rights and in particular value to the neurodiversity condition, demanding recognition and acceptance. Autism can be seen as a natural variation on par with for example homosexuality. The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable."

      [url]http://www.ncbi.nlm.nih.gov/pubmed/21311979[/url]

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  7. You name a handful of famous scientists. Given that many autistic people do not finish high school and even less finish college, I have difficulty imagining that you can get 55% qualified scientists with autism who are capable of the team work that is required for such research.

    Yes, you do claim that autistic people are superior. You assert that the only suffering caused by autism is the existence of non-autistic people. Sure, if autism was the majority neurological makeup of people, then it wouldn't be a disability but that is not reality. Then there's the assertion that everything that is valuable in human history was created by autistic people and the diagnosing of dead people with autism based on anecdotes about the person being smart and having a quirk. Even your precious Temple Grandin says that without autism we'd all be sitting in a cave. So yes, that is asserting that the autistic brain is superior and far from advocating for neutrality and acceptance.

    What is wrong with developing drug treatments for autism? Drugs work for a lot of conditions very effectively. Just because there isn't one for autism at the moment doesn't mean there won't be in the future, unless of course the ND movement gets its way and all medical and genetic research is stopped. Most of ASAN's solutions consist of telling neurotypical people to stop expecting basic manners and hygiene in the workplace and in social situations. That isn't going to happen and that doesn't benefit people suffering from the very real disabilities caused by autism, not by evil neurotypicals.

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    1. As has been said many many times by many people, by Lydia and by commenters: YES autism IS a DISABILITY and no one has said it is not.

      The point of neurodiversity is not that autism is superior, but that the autism has the potential to provide ideas that might not be thought of did it not exist, just as non-autistics are better than autistics at many things.

      If it weren't for the 'neurotypical' mind, we wouldn't just be sitting in caves, we'd probably wouldn't even be here today; I don't think Grandin was saying that Autism is superior, she was saying that autistic people have provided innovations that led to the advancement of humans (and those autistic people likewise needed the majority of the population's support to be able to provide those the help with the things they are good at. Certain people are better at certain things, and certain people are not as good at certain things. Everybody needs everybody).

      This is probably one of the best websites I've seen that explores the history, genetics, and cultural aspects of what exactly autism is:

      http://www.shiftjournal.com/

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    2. I am not Temple Grandin, and her existence does not mean that I automatically agree with every word that comes out of her mouth. I have never advocated the view that Autistics are superior to non-Autistics, and never will. I have clearly stated that the suffering that Autistic people experience is a direct result of attitudes, policies, and practices constructed and perpetuated by society. The suffering that we experience is not a result of "the existence of non-autistic people" as you claim; you are twisting my words and putting words into my mouth. Those attitudes, policies, and practices can be held and implemented by Autistics and other disabled people as well as by non-Autistic people. You are making a straw man argument. You are attempting to represent me and my views in a way that is convenient for your argument without addressing the content of anything that I have ever actually and explicitly claimed or written.

      I have also never made the assertion that everything valuable in human history was created by Autistic people; again you are putting words into my mouth that were never there in the first place. Yes, there are people who argue that point; I am not one of them. Furthermore, I take serious issue with the idea of posthumously diagnosing historical figures as Autistic; that idea is scientifically invalid and dangerous; I resent your assumption that simply because I support neurodiversity, I must also make wild and unfounded guesses about the neurologies of dead people. I have never done that, and never will.

      Furthermore, the neurodiversity movement and its proponents do not oppose the ideas of interventions, therapies, or other means of mitigating disabling aspects of autism. That is such a common misconception, and it's misguided at best, dangerous at worst. What we oppose is the idea that autism is something that ought to be eliminated, or the idea that Autistic people should only be treated as collections of deficits rather than complete human beings who have rich and meaningful existences. Recognizing the reality that autism is a way of being and existing is in no way denying that many Autistic people do experience very significant disability; the neurodiversity movement is NOT comprised exclusively of people who experience little to no disability. In fact, I have personally known Autistics who support neurodiversity who also require intensive supported living services, supported employment, and or who have been unable to attend postsecondary education. You are, again, making a straw man argument by creating this mythical idea of the monolithic high-functioning Autistic who doesn't really suffer and doesn't understand what it means to suffer.

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    3. @Lydia: Can you offer some explanation as to why the ASAN organization makes a specific attempt to discredit the autism speaks organization on the ASAN web page in a fact sheet providing partial information on their rating from the charity navigator organization as well as criticizing the organization for having no members on their board of directors on the autism spectrum, while at the same time on the same fact sheet endorsing the Autism Society of America evidenced as having the same rating of 2 out of 4 stars for financials and 4 out of 4 stars for accounting and transparency, as well as the same overall high rating of 3 out of 4 stars.

      And in addition, as linked in this discussion, no individuals in either organization disclosing an autism spectrum disorder on the board of directors, as well as 8 members on autism speaks board of directors whom are parents of children with autism as compared to 1 member on the Autism Society of Americas board that is a parent of an child with autism.

      In the interview above linked on the wrongplanet website the autism speaks organization refutes many of the other claims made on that fact sheet, as quoted directly from an officer of that organization.

      It doesn't appear fair that the ASAN organization would criticize one organization and endorse another for meeting the same standards criticized for only one of the two organizations in the fact sheet.

      Could it be that the ASAN organization is not aware of those inconsistencies in the presentation in that fact sheet? If so, I have provided third party evidence that those inconsistencies exist. But, if you have evidence to the contrary I would be interested in hearing about it, in a reasonable discussion.

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    4. "Given that many autistic people do not finish high school and even less finish college, I have difficulty imagining that you can get 55% qualified scientists with autism who are capable of the team work that is required for such research."

      Yeah, a lot of blacks and Hispanics don't finish high school or college either. Does that mean that black and Hispanic scientists should be marginalized in matters directly pertaining to blacks and Hispanics?

      "Yes, you do claim that autistic people are superior. You assert that the only suffering caused by autism is the existence of non-autistic people."

      I fail to see how that amounts to an assertion of superiority. Sorry to beat a dead horse, but there are plenty of black people who have claimed, accurately, that their suffering as a group is largely due to discrimination by whites. Are you about to call Martin Luther King a black supremacist?

      "Even your precious Temple Grandin says that without autism we'd all be sitting in a cave."

      I again fail to understand how this is a claim of autistic supremacy. Without the Arabs we wouldn't have algebra, and without the Chinese we wouldn't have...well, a lot of things. Did I just say that the Arabs and the Chinese are superior beings? I did? Oops, sorry about that.

      Sorry, but equality=/=supremacy. Only someone consciously or subconsciously bent on seeing other people as inferior would conflate these two concepts.

      Regarding the drug thing...I'll just defer to Lydia's response to explain how wildly wrong you are.

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    5. "Only someone consciously or subconsciously bent on seeing other people as inferior would conflate these two concepts."

      As one character says during Serenity, I do not murder children. I also do not provide excuses for the murder of children, convince gullible idiots that murdering their child is the right or beneficial thing to do, nor do I tell people that torturing children (which is what pouring bleach into an anal passage basically is) is somehow beneficial.

      So if a person is offended by supremacism such as that which I tend to exhibit, maybe they should ask their normalistic brethren to stop exhibiting all of the behaviours described above.

      Or is the normie movement going to blame us for the inevitable consequences of outputting propaganda that we are worthless and not Human beings, too?

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    6. "I would be interested in hearing about it, in a reasonable discussion."

      Sorry to be a curmudgeon, but how can we have a reasonable discussion if you, you know, lie and make things up about Lydia's stances and the viewpoints of the autistic self-advocacy community in general?

      Unless this latest "Anonymous" is a different "Anonymous" from the first "Anonymous" who made the bizarre claims about autism supremacy. In that case, kindly disregard what I just wrote.

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    7. Being black or Hispanic has no relation to mental function, being autistic does. No, Arabs inventing algebra is not a statement of supremacy, stating that all inventions and developments in history were done by autistics and all non-autistics are capable of is sitting around idly is a statement of supremacy.

      Oh and all non-autistic people support bleaching, chelation and other forms of torture? That's news to me. The majority of people not completely blinded by woo oppose these things. Yes, I support research into treatments including those that would eliminate a person's disability. It is no different than supporting research into helping the paralysed regain function. If you enjoy being disabled, no one is forcing you to take those treatments, but don't deny it to those that do.

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    8. Okay, since I'm not sure which "Anonymous" is which around here, let me take compare some of the statements of the specific "Anonymous" who posted at 8:42 pm. First, you said "many autistic people do not finish high school and even less finish college." Then, in response to my statement about black and Hispanic scientists, you said, "Being black or Hispanic has no relation to mental function, being autistic does." The logic of these two comments leads me to believe that you consider us to be mentally inferior, which supports what I wrote before about conflating equality and supremacy. If you meant something different, please enlighten us.

      Additionally, "stating that all inventions and developments in history were done by autistics and all non-autistics are capable of is sitting around idly is a statement of supremacy." Who said that? Temple Grandin didn't. I didn't. Lydia didn't.

      And: "all non-autistic people support bleaching, chelation and other forms of torture?" Again, nobody said that.

      I regret to inform you that your grasp on reality is tenuous at best.

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    9. @Chris, thank you for acknowledging that might be a different anonymous, it is.:) You won't see me saying anything I can't back up with third party evidence. And will be happy too provide it, but cannot provide if it is censored.

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    10. I was trying to respond to several posts at once. No, I did not say mentally deficient, but autism does affect one's performance at school, being black does not. Autism has, or used to, before it was redefined as a personality quirk, had a strong relation to mental retardation. And yes, I can cite evidence for all my points if you like but I was trying to merely state my opinion not write a dissertation. In my discussions with ND activists I've been given lists and lists of dead famous people that were supposedly autistic. Given that it is difficult enough to diagnose living people in a psychological setting, I feel it's ridiculous to diagnose dead people based on anecdotal evidence. Yes, there have been actual diagnosed autistic people that have done remarkable things, cite those, don't give me someone who died 1500 years ago and was reported to have had some quirk. I do not misrepresent viewpoints of the ND movement, but what I see from it on a regular basis.

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    11. "Autism has, or used to, before it was redefined as a personality quirk, had a strong relation to mental retardation."

      As Ronald Reagan would say, "there you go again." (For the record, I hate that guy.) First of all, nobody's trying to trivialize autism into a "personality quirk." This is Grade A BS, so knock it off. More to the point, however, how are we measuring "mental retardation?" I invite you to familiarize yourself with the discourse regarding the neurotypical bias of IQ tests. In brief, IQ tests often depend very heavily on neurotypical communication. If you can't communicate very well in that way, chances are you'll be given a lower IQ score. For the moment I'm going to assume that you're an intelligent person. What if someone sat you down and gave you an IQ test in, say, Quechua? Chances are you'd fail. Welcome to the life of a nonverbal autistic person.

      You are quite correct in saying that "autism does affect one's performance in school." This often has a lot to do with the quality of services and accommodations one receives--which, I assume you've noticed, is one of the main thrusts of the neurodiversity movement. I, for instance, had major difficulties in elementary and middle school due to my math and handwriting skills and my difficulty taking tests within time constraints. A number of teachers and professionals wanted to relegate me to special education classes. But when I was given accommodations like a word processor and extended time on exams, I oddly had fewer difficulties. Now I'm working on my Ph.D. Some "retard" I turned out to be. Moreover, I contend that being autistic has helped me in this regard; a Ph.D. requires very specialized interest, which autistic people tend to exhibit.

      Additionally, if you really think we base our arguments on the potential autism of some dead people, you clearly haven't made an honest effort to understand our viewpoints. There are enough living and proven autistic people to back us up. The dead folks are essentially peripheral. If your goal is to "not misrepresent the viewpoints of the ND movement," you can start by not misrepresenting them to yourself.

      And on a final note, if you claim that you can back up the rather bizarre claims you made about us in your last post, you really ought to think about doing it. If you don't want to write a "dissertation," you shouldn't get into a discussion with autistic people. Hopefully you're aware by now that we can often be long-winded. We also don't like being slandered.

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    12. I get really tired of people acting as if autistic people within a certain broad spectrum of opinions are a unified group. That each of us must answer for the opinions of everyone else.

      I don't consider myself "an ND". I am not, and likely will never be, part of ASAN. I am so far from Temple Grandin it's ridiculous -- I've put a lot of effort into exposing the ways she says horrible things about people with forms of autism she considers too low functioning to be useful, and people with other conditions.

      I'm not "an ND" because that term was created in an environment that was utterly polarized and hostile, and specifically created by opponents of the people so described. I refuse to recognize terms created in such situations. I'm not a member of ASAN because I learned a long time ago that it's usually bad for me to be a joiner in such situations.

      And when an opponent groups everyone together like this, it means a lot of bad things. It means that any one person must answer for all other people in the group. It suggests that everyone is getting our viewpoints from the group, rather than reaching separate opinions for our own reasons. Itv

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    13. Sorry. Limitations on an iPad. Continuing.

      It suggests we are all homogenous and all coming to these discussions from the same place in the world.

      And we don't come to them from the same experiences. Whether those experiences have to do with autism, or disability, or someplace else. Neither do we have the same opinion as each other, so we can hardly answer for each other's viewpoints.

      So I continue as usual somewhere off to the side and unaccounted for in these discussions. So do a lot of us. Off to differed

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    14. Argh. Cut off again.

      Off to different sides, maybe, but all off to one side or another, where nobody bothers to look, because they assume we are somewhere predictable.

      Would say I'm sorry to confuse anyone. But I'm not. I can only suggest people stop looking for us all in one place. Then you'd be less confused by where we really are.


      There. Done. And the Blogger interface didn't cut me off this time.

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  8. Plus, the world of science and technology is disproportionately filled with autistic people.

    http://www.wired.com/wired/archive/9.12/aspergers_pr.html

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    1. @Brian

      No, that's not what the article states, it states as quoted in the excerpt below that there has been a large increase of children diagnosed with classic autism in that area. There were no statistics specific to Aspergers or adults in the tech field with a diagnosis of an autism spectrum disorder in that article. That's not to suggest that there are not perhaps a larger number of individuals with systemizing skills associated with the broader autism phenotype, in that area, per the skills required in that tech rich area, but there is no evidence of a disproportionate number of adults working in the fields of science and technology in silicon valley actually diagnosed with an autism spectrum disorder. For whatever reason, those adults are evidenced as having a higher number of children with autism spectrum disorders than other areas of the country, however the highest statistics measured per current research is in New Jersey and Utah, per government CDC statistics as low as 1 in 29 per 8 year old males measured in classes for the developmentally disabled. This is the same nationwide methodology used by the government that arrives at the overall 1 in 88 statistic for 8 year old children diagnosed with autism spectrum disorders.

      "And now, something dark and unsettling is happening in Silicon Valley.


      In the past decade, there has been a significant surge in the number of kids diagnosed with autism throughout California. In August 1993, there were 4,911 cases of so-called level-one autism logged in the state's Department of Developmental Services client-management system. This figure doesn't include kids with Asperger's syndrome, like Nick, but only those who have received a diagnosis of classic autism. In the mid-'90s, this caseload started spiraling up. In 1999, the number of clients was more than double what it had been six years earlier. Then the curve started spiking. By July 2001, there were 15,441 clients in the DDS database. Now there are more than seven new cases of level-one autism - 85 percent of them children - entering the system every day."

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  9. I start here, were I started coming back from the road, backtracking to where I left off a week ago, following your words, and the one slithering between them - a vermin pretending to be one of us. And I followed in its tracks as it jumped from one of you to the other, spitting venom - to the place we parted, to the name it has called itself then – “The Caretaker of people with Autism”, not a parent.

    I watched your track Slithering, spitting insults here and there in proud arrogance. How smug you are. You know every detail, every tiny doing, you take care of everything, you know it all, because you are IT. You are “Autism Speaks” - that is your other name.

    We’ve rousted you out vermin; a challenge thrown at you - from those in your hand - it annoyed you and you came out. You wanted to give us a lesson, to humiliate with your superiority, with your reason and knowledge, and your facts, and your power over us. That was your mistake. It’s you we’ve been after, and I have waited for you to take the bait for some time. And you did; it made me feel good.

    Sure you got us things: insurance – to keep us all in your control, adults too. And you also get to keep the money for that, and to receive the praise for this doing. How ingenious. And you attack those who say it is vaccines – you are so thorough – it needs protection as well – vaccines are yet another part of your realm, you wanted to reinforce that end as well. Yes - you try to satisfy all - what the heck, a lot of them are your “tribe” anyway (another vermin). Why not – when the prize is us (you know who we are), and you want to make sure we do not escape you.

    Oh, how would you love to have us at conception when the choice is made by the One with the Purpose, and do your meddling there! Ah, and to have an unrestricted access to that “abnormal brain” of ours - to that “abnormal” growth. You desire to feed on it - research in that direction… And to crawl into Amanda’s mind - you sensed she might have something there you don’t yet know.

    “Us is evidently more relevant to I than we”, you said. You pretend to be one of us - but your tracks reveal who you are. You pretend to be a human being - but your forked tong is giving you up – it is not a part “of the general nature of human beings”. Yes, it is more relevant to you, the vermin – but we don’t want you among us.

    “Yardstick of reason” – is a merciless stick. And the reason is known to do merciless things to humans. It was Reason behind Slavery, it was Reason behind Genocide, it was Reason behind Inquisition, it was Reason behind Crucifixion - your Reason. You thought you had us then on a Cross.

    Research, Science, Progress – all can be subverted and corrupted by Reason in the hands of Evil. And that is what you are – “the Yardstick of Reason”. Josef Mengele has called himself that name! Have you forgotten it already? Or was it arrogant insistence and contempt of humans in bringing it out again? That was your other name then, when you did your Research and the Science of Extermination of Human Beings. It was Science, and Progress, and Reason that you invoked to subvert the purpose of The One who created the mankind. “Yardstick of reason” you now wield against us again. Against us and against the Humanity. Us is Them, us is the humanity, we are a part of it. And we have rights, by law, as individuals, and as people. And we will wield it against you.

    Yes, you know a lot about us. But we know you too; who you are, and your real name. Oh, yes - it’s you yourself, you would not entrust anybody but yourself with this task. You came out and took the bait and revealed yourself; but there was also another reason for it - you felt a threat, and it felt real; it was not just the bait, that got you out of your lair. You felt fear and you were right.

    I’ll come to your funeral Autism Speaks, together with Our People, and there’ll be no Caddish for you Baal.

    Vorya Yarow.

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    1. I'll reply back as it seems that I am one of the individuals that has chosen to remain anonymous here, as you do with a different term than anonymous, however there are obviously more than one that goes by that choice per providing an opinion here.

      As an anonymous individual, I don't expect for anyone to believe anything I say if I can't back it up with third party evidence. If you need a link to the internet tribal stuff, a common enemy and social cohesion on the internet, that can be backed up by third party research as well.

      I do attempt to measure life with a yardstick of reason, that's about as hyperbolic as I can get. However, I must say that I wish I had the use of metaphor that you evidence here.

      I'm not very good at metaphor, but I'm good at using google and looking up facts, comparing them, and determining in a rational manner who is correct per those facts and who appears to be incorrect.

      If I happen to provide any hyperbole that I cannot back up with evidence you are welcome to discard it, as I am only an anonymous individual, however if you choose to ignore evidenced third party facts from reputable sources, it's hard to have a reasonable discussion on a controversial issue like the pros and cons of the autism speaks organization and the fairly new ideology of neuro-diversity.

      I find it particularly disturbing that the ASAN organization that does a lot of good, continues to misrepresent the facts on autism speaks on their website. I can understand the emotional hyperbole in blogs, but not in an organization attempting to represent individuals with autism, in a professional manner.

      I found it even more disturbing that I reported it to that organization, and they ignored a rational conversation on the issue. I've been looking for someone from ASAN to discuss it with, and found what appears to be a reasonable individual here, that presents a well rounded definition of autism, in one of her blogs entries, that is among the best that I have seen, and one of the few individuals from ASAN that I have found on the internet that will even entertain opposing viewpoints, or does not immediately censor them, if they are not completely in alignment with the neurodiversity ideology.

      The ASAN site will not entertain any comments at all on that site I suppose unless one pays a fee to join the organization, since my voice of autism was ignored, when I attempted to engage the organization in reasonable discourse through an email, that I have basically reproduced here, to see if anyone would respond to may valid criticisms backed up by third party evidence, which too have been completely ignored, which I suspect is evidence that the facts I present speak clearly on the issue, and are not refuted with other reasonable third party evidence.

      The only metaphor I find disturbing in your comment is the use of the metaphor funeral in ill will per the finality of death toward an organization of hard working individuals that is evidenced as helping individuals with autism.

      Although, it does match up well with sociological theories associated with the internet per a common enemy, social cohesion, and what anonymous individuals will type about 1.5 billion Muslims, many of which exist peacefully on the planet, and politicians like Obama that have been wished dead because he passed health care reform. And amazingly by people whom are desperate for it, qualify for it, but have been convinced by hyperbolic language that they aren't going to be able to afford it, even when it's free through medicaid.

      I don't have a whole lot of emotion but I find it sad, per the general human condition, as there is a world evidenced that appears to comprise some whom have gained what appears to be a cold connection toward their fellow human beings. I was a football fan but I never wished an opposing team dead; sadly there are some that do.:(

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  10. The human condition saddens me as well. But this is not about football teams and it is not a football game.

    This is about Humanity, and the organization (not even a life form), which took hold of the human children under a guise of help, and is doing to them precisely what you have described – the inhumane acts.

    Your yardstick is indeed hyperbolic, and in 1943 it measured at 150cm – and those who passed under went to a gas chamber. That was an easy merciful death. The rest went to your research. You don’t dispute that, nor does it disturb you. Things we’ve done, do not disturb us.

    You do not see it - I have no ill will toward you. This game-it is a game for you - this game we play, you and I – this game is to the finality of Death. That has disturbed you – the thought of your funeral - you, the organization, which is not even a life form! It disturbed you – you thought you were immortal. You were wrong. This game we play is about the survival of human race, none the less. We’ll fight to death.

    These are not metaphors, none of it is. The Justice and Death are real and they will find you. And I’ll come to your funeral Autism Speaks, together with Our People.

    Vorya Yarow

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    1. Autism Speaks is an organization comprised of over 200 employees, and 340 thousand volunteers. It is a living breathing organization comprised of human beings. Most of which have family or friends with an autism spectrum disorder.

      Just as the members of the ASAN organization that comprise that organization are living human beings some of which have family members with autism spectrum disorders.

      I am a person that was born as a non-verbal individual with autism that never heard about the organization, until seeing it promoted in an online autistic community. I haven't even participated in an autism walk, as one of those 340K volunteers, or have been part of the million of Americans that support what is evidenced as a beneficial mission for individuals whom are diagnosed with autism spectrum disorders.

      Beyond this you focus on this one organization that meets or exceeds the standards that it is criticized for by ASAN as compared to the Autism Society of America, a cure organization for autism that has a sister organization, the Autism Research Institute, that has absorbed the DAN Defeat Autism Now organization that supports chelation as an FDA approved treatment for heavy metal poisoning in children with autism, as well as still pursuing mercury as a potential factor in autism spectrum disorders.

      ASAN endorses this organization but not autism speaks on the same fact sheet on that website. There is nothing evidenced legal or ethically nefarious about ASA nor is there for Autism Speaks. But these facts expose what appears to be a hypocritical action by the ASAN organization, in their criticism of autism speaks and endorsement of ASA on the same fact sheet on their website.

      Their missions and goals are almost identical except that ASA has a separate organizational arm for research for alternative medical cures for autism.

      ASAN also has a vital mission to help individuals with autism spectrum disorders, but appears to be out of touch with the facts on that organization's website per what it criticizes for autism speaks evidenced met standards compared to the endorsement of ASA that does not exceed the standards that autism speaks is evidenced as meeting per the third party watchdog group, Charity navigator.

      Meanwhile, you are metaphorically providing an analogy of me, a person diagnosed with an autism spectrum disorder and the NAZI's, rather than attempting to engage in a discussion of logic to refute any of the facts I have presented with third party evidence. Obviously you have nothing to provide, to refute those facts or you would have provided it by now, instead of resorting to Godwin's law, in your first post back in response, and in this one too.

      The longer ASAN continues to provide misinformation on their website after it was brought to their attention, per this issue, the longer it appears evident that they are not capable of admitting mistakes or even correcting them and moving on as autism speaks has been evidenced to do in removing videos that some found offensive from their website.

      Some times the shoe must be placed on the other foot, to get an idea that everyone is human and capable of making mis-steps, even small and big organizations filled with caring people, but that doesn't make anyone a NAZI.

      Not me, not you, not ASA, not ASAN, not Autism Apeaks, not ARI or those absorbed by that sister organization of ASA, DAN, nor any of the other 2000+ organizations that help individuals with autism. Now that organization in Massachusetts that uses aversive shock therapy, is something to be concerned about, considered abuses have been evidenced, but even at that level of problems, Autism Speaks is still getting the lion share of free advertisement for brand recognition for that catchy phrase autism speaks, from autistic online communities, and ASAN.

      Delete
    2. (different anonymous)
      Please stop with the Nazi metaphors. Doing research into treatments is not the same as putting people in gas chambers. Abortion is a woman's choice and right, not the same as lining people up in front of a mass grave and shooting them. While we may disagree as to what kinds of treatments and research we support and to the benefits of neurodiversity, none of us are anywhere near evil Nazi level. Even the woo-loving AoA/DAN/TACA do not even come close to what you are comparing Autism Speaks to.

      My position as, a person with an autistic family member that has serious sensory sensitivities and a myriad of self-regulation and social problems that work against each other, I would like to see research developed that would help him and yes, prenatal testing so that families are prepared. It isn't about elimination or Nazis or whatever other hyperbole. We are coming from different places. I see a person and family struggling with something and currently there is very little that can be done. In no way would I want to see anything bad to happen to my nephew, I want him to live a life where he does not have so many barriers in doing what he wants to do in life and unfortunately most of those barriers are put up by his autism.

      I do also want to thank the blogger for allowing a variety of viewpoints. It seems in this debate each side is unwilling to most of the time. And I apologise if my rhetoric was upsetting or offensive.

      Delete
    3. I agree that the slippery slope Nazi reasoning isn't usually very helpful in cases like this. Nevertheless, there is a reason it got introduced, which is that it touches on the issue of eugenics (which actually has been practiced right here in the US in recent times).

      I don't want to get sidetracked with the issue of abortion, but I think it can be agreed by many, even pro-choice folks, that it's a serious issue not to be taken lightly.

      90% of children that test positive for Downs Syndrome are aborted. But: this test can provide false positives. Downs people live meaningful lives. And like autism, there are different levels of intellectual impairment (some barely qualify for the label of "mentally retarded").

      Even if the child turns out to be more severe or a stress to your life, it's a shame that we feel we can eliminate certain types of people based on them not fitting the model of life or child that we'd hoped for.

      While prenatal testing could in theory prepare someone for the challenges ahead, in practice, it leads to the extermination of people for not fitting the ideal child parents want. Even if it's done in the NAME of preparation, the FACT of what happens is extermination.

      If prenatal testing becomes possible for Autism, which I believe it will, the same will happen.

      There's a TON of grey between "types" of autism, each arbitrarily defined type blending into the next, from geeks and nerds down to aspies, down to HFAs, down to LFAs. There's chromosome you can make an objective test for, but because there are physiologically testable traits, there will come a time when we can use those to at least predict the likelihood of Autism in the womb - though there is no way you will be able to tell at what 'level' it's going to turn out to be, except maybe statistical predictions.

      Suppose you have Aspergers of HFA and have come to be married, have a job, children, and are using your cognitive skills related to Autistic systems oriented thinking to better the world - maybe you better it by being a janitor, maybe you better it by curing some deadly disease. But your life is meaningful. You're definitely Autistic, but you function well enough to pass for just being a geek, a weirdo, or maybe even a kind of crazy guy that locks himself in his house with his computer (or whatever odd obsession he has)

      But wait: you tested positive for Autism before you were born. Sorry, you were aborted and don't even exist in order to live out that life. Not because your mom was raped, had serious health problems, or because you were missing limbs or a half your brain, and not because you had a life shortening genetic disorder.

      Nope. You were aborted because your Mom got the results back and they said 90% chance of Autism.

      Autism? She thinks. But...that means....Screaming, rocking, biting, helmet wearing, shell of a child bound for an institution. Maybe it won't be that bad, but she has the option of trying over again...so...why take the chance with this one?

      Delete
    4. ...Little does she know that her child is destined not for the institution, but to become a nerd. Maybe a computer geek. Maybe a scientist (whether world changing or mediocre). Maybe a janitor that plays D&D on the weekends. Maybe a socially awkward banker. Maybe a writer. Maybe a homeless bum. Maybe an eccentric millionaire.

      Maybe he will end up institutionalized.

      Or maybe he'll devote his life to helping institutionalized people, people with disabilities, minorities, oppressed people, the poor.

      Maybe he'll turn out to be a cold soulless jerk.

      WHO KNOWS.

      ...What I DO know is that most HFA/Aspergians are what in past times we would have simply referred to as nerds or geeks (while "LFAs" were diagnosed with Schizophrenia or some sort of psychosis). So to a degree, we're talking about prenatal testing for nerdiness - and subsequent termination of child for being a potential nerd. Wow that's a strange concept.

      What I find really ironic, is that so much of the technology and science that is going to lead to prenatal testing will be built largely on the works of Autism Spectrum folks - the science and tech geeks. I'm afraid we are on the verge of killing off the creative minds that have, due to their individualistic and systematic (autistic) brains, contributed so much to the development of science/technology/art, etc.

      I'm not saying we shouldn't research causes of Autism, one of which is very likely hormonal levels in the womb. I'm saying the research needs to be done in an environment in which Autism is not viewed as a disease, retardation, or intrinsically defective, so that any prenatal testing that does get developed actually IS used for good and not the extermination for alternate neurotypes.

      But the larger cultural perceptions of how Autism has been defined by groups such as (and particularly by) Autism Speaks, we are going to end up eliminating an outlier in our neurological and genetic makeup which has been crucial and beneficial to humankind - all in the name of helping/curing/preventing those individuals society has deemed TOO burdensome or defective for society to tolerate.

      Delete
    5. It's actually already happening through genetic counseling, as those with a family history of autism spectrum disorders, and children currently diagnosed are given odds of developing an autism spectrum disorder; the genetic counseling information given is to abort a male child because the odds are much greater that a male child will develop an autism spectrum disorder. No prenatal tests are necessary for this just a family history, as is the case per other issues in genetic counseling where a prenatal test does not exist.

      There are already postnatal tests sold by for-profit research organizations for earlier potential intervention that provides small significant statistical odds, but they are based almost entirely on a marker of fragile X syndrome, the highest genetic marker associated with an autism spectrum disorder.

      It is already evidenced as impossible that a genetic prenatal test is going to be developed that is definitive considering that identical twins are evidenced as not sharing the condition in a significant number of cases, through the newest twin research where environment is evidenced to play an equal if not a greater role.

      If one is against the development of a genetic prenatal test, they can thank autism speaks, in part, because they funded that research.

      And that research potentially statistically reduces the odds per genetic counseling considering that previous research in much smaller studies indicated that autism was close to 90% genetic associated while now the odds are down closer to 50% per current research.

      Per these facts autism speaks recent funded research is reducing the potential that a reliable definitive prenatal genetic test will ever be developed.

      It's highly unlikely that a prenatal test for down's would have ever been developed if there was any potential of identical twins where one identical twin had down syndrome and the other identical twin did not.

      The Down's syndrome prenatal test analogy does not have an equivalent bearing per this point.

      Delete
    6. It is the research scientists many of whom are likely on the broader autism phenotype that are associated with autism speaks and members of their scientific advisory board along with their Chief Science Officer, named "a Rock Star of Science", with a storied science career provided by Wiki.

      As one can see below, Autism Speaks doesn't censor neurodiversity advocates in science research associated with autism as the organization awarded over $400,000 to Michelle Dawson and Laurent Mottron's research group comprised of individuals diagnosed with autism.

      While the ASAN organization refuses to acknowledge the individual with autism, John Elder Robison, by name, on the fact sheet linked below, who contributes to that organization as referring to him as a token autistic, Michelle Dawson won't likely receive that criticism, for her association with the organization, because she shares the same viewpoints as the ASAN organization per neurodiversity ideology.

      It is sad that Autism Speaks as a charitable organization shows no evidenced discrimination against self-advocates that don't share all their stated mission goals, per research awarded, whereas the ASAN organization makes a concerted effort in the fact sheet on their home page to discredit autism speaks with misinformation, that can clearly be refuted, as the standards they criticize for autism speaks are the same high standards that the organization they endorse, ASA, meets or falls short of, as evidenced in the links below. The truth is there for all to see, there has been no refutation provided against it.

      http://www.rockstarsofscience.org/2010_rockdocs_dawson.htm
      http://en.wikipedia.org/wiki/Geraldine_Dawson

      http://www.autismspeaks.org/science/grants/behavioral-and-functional-neuroimaging-investigations-visual-perception-and-cognition

      http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf
      http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=8321
      http://www.autism-society.org/about-us/board-advisors/board-of-directors.html

      When one attacks the mission of autism speaks one attacks both those whom care about individuals with autism spectrum disorders, whom struggle with symptoms and co-morbids associated with those disorders, as well as those whom work in the organization and are funded by the organization to continue research into all areas of the spectrum, among those whom are evidenced as diagnosed with autism spectrum disorders, receiving research funding, regardless of political ideologies associated with a cure per the good work they do to provide a better understanding of the entire spectrum.

      There is no fine line between us and them, per the overall spectrum and the autism speaks organization as well as the millions that support the organization in dollars, volunteer work, or spirit, it is in part we, regardless if one can see that reality or not.

      It is extremely difficult to break human illusion, but I would hope that science oriented people can assess facts and move on in a positive direction. But, it is more than obvious that not everyone with autism is science oriented. In fact the online autistic communities, when informally surveyed often score high in measures of schizotypal/magical thinking. It is also evident in discussion on psi phenomenon, and UFO's, but interestingly, not nearly as evident when religion is discussed. There is likely a social component in the mix, that makes the difference.

      Delete
    7. Nobody is talking about exterminating or killing or terminating people. Yes, some people will terminate a pregnancy based on a prenatal test. A pregnancy, not a person, not a baby, not an entire way of thinking. That choice belongs to the woman, and the woman alone. Whether the choice is a worthy one doesn't belong to me or anyone else unless I'm the one pregnant.

      But given that autism is likely (due to research) a combination of environmental and genetic factors, a prenatal test(other than the kind that the other Anonymous talks about) is an impossibility in the near future. However, there are many other forms of research that may help alleviate some of the symptoms of autism that cause people problems. I'm not talking about fixing a defective person. I'm talking about something that would make it so a person with severe sensory issues would not suffer physical pain due to ordinary daily sounds. I'm talking about something that would help a person understand communication better. I'm talking about something that would help a person be able to organise so that ordinary tasks like brushing one's teeth can be done independently and in a reasonable time. None of these things, and others, exterminate a person or their way of thinking but would go a long way in helping them and their families. I don't understand why those things are bad.

      In recent years, most autism organisations have gotten away from the stereotype of the rocking, screaming child. With more media depictions of HFA and the autism awareness (that is spearheaded by AS usually), stereotypes can be broken. However, you can break stereotypes and do research simultaneously.

      Delete
  11. The “God win” that you object to, you invited here yourself with your “yardstick of reason” - a Josef Mengele nickname. I’ve simply brought it into focus. As I do now showing you the true words that comprise “Godwin”. Think about it. Why these two words and not the others.

    This battle was not chosen by me. You know how it was chosen and why. You are not the worst, but you are the cornerstone of them all. Perhaps that is why you were chosen first.

    But you indeed are the “organization of individuals”, and that is why Lydia has given you a choice - a chance to repent and change. You have been deaf and blind in your arrogance insisting on using this stick of yours when dealing with autistic people. Why? Because you think you can beat the Autism out of the children with it, and everything is permissible in finding how to do it. That is the true meaning of your ideology.

    I’m ready to fight you to death, but Lydia, our young princess, is merciful and just. She is giving you a chance, a noble chance. You should take it while it’s not too late. Lay down your stick and listen to your heart. That is a human way.

    Vorya Yarow

    ReplyDelete
    Replies
    1. And by the way, I was the yardstick anonymous not the last anonymous that replied to you.:) And please, I can use google, but I am not part of the autism speaks organization. It's a special interest. So is healthcare reform; I can use my friend google to dispel most of the urban myths that have been circulated against what should be celebrated here as the best thing that has happened for the disability movement, in decades.

      Interestingly, there is a significant percentage of individuals in online autistic communities against it.

      This is one place where I can certainly agree with ASAN's position, as well as many other things the organization does associated with the disability movement, including supporting ADA disability language associated with autism in EEOC legal code; they managed to get a clarification on the definition of Autism, from the EEOC, indicating Aspergers is definitely included in their legal definition of Autism, which is very much a positive thing for individuals diagnosed with Aspergers as it should make it easier for them to gain coverage under the ADA in the workplace.

      Most people with autism in online autistic communities, have no idea what the ADA is. My personal self advocacy effort has been explaining those benefits to those individuals as well as providing whatever information I can from my experience adapting as a non-verbal individual with autism over the course of over forty years, through trial and error methods, that I found success with.

      In part, those methods were avoiding excess sugars, a religious routine of exercise, and putting myself among people to connect. Along with playing a musical instrument and singing to get in touch with emotion and tone of communication. I believe it is one of the main reasons I found a way to communicate.

      Now as I look at research I understand why many of the things worked for me, as exercise brought my adhd symptoms into focus, through natural neurochemical release, and burned off stress hormones for relaxation to decrease the stress response to an incredibly stimulating and challenging world. Also increasing my motor coordination skills, that were lacking from birth.

      There were some days that I literally could not initiate a conversation, but after playing the piano for hours in a night, it was like I exercised a social communication muscle, which per research is associated with a connection of emotion that provides, in part, the motivation to communicate.

      And while not many want to hear it, in part because of the addictive properties, video games, and computers, other than adaptive communication, are not the answers for adaptation that individuals with autism should narrow their focus toward, per the state of research on those issues as they relate to brain development/neuroplasticity and structural changes in the brain.

      The mind, body and social nature can be strengthened in a 3 dimensional world, evidenced per the process of neuroplasticity, however it can be weakened as well depending on the environment and activities one is exposed to. It can be difficult in modern society to determine what is good and what is bad per these influences, because some of the potentially dangerous influences, provide a great deal of perceived pleasure.

      I didn't need the type of help that autism speaks provides, but that research could potentially eventually save the life of a child like mine that succumbed to immune system issues, associated with autism. The only potential hope for a child in that situation is the kind of research that autism speaks funds. And their other funded research efforts for the rest of the spectrum are proven valuable as well.

      Delete
    2. @vorya yarow: Your argument appears to be that research science into autism spectrum disorders is a bad thing. But it is the research scientists many of whom are likely on the broader autism phenotype that are associated with autism speaks and members of their scientific advisory board along with their Chief Science Officer, named "a Rock Star of Science", with a storied science career provided by Wiki.

      As one can see below, Autism Speaks doesn't censor neurodiversity advocates in science research associated with autism as the organization awarded over $400,000 to Michelle Dawson and Laurent Mottron's research group comprised of individuals diagnosed with autism.

      While the ASAN organization refuses to acknowledge the individual with autism, John Elder Robison, by name, on the fact sheet linked below, who contributes to that organization as referring to him as a token autistic, Michelle Dawson won't likely receive that criticism, for her association with the organization, because she shares the same viewpoints as the ASAN organization per neurodiversity ideology.

      It is sad that Autism Speaks as a charitable organization shows no evidenced discrimination against self-advocates that don't share all their stated mission goals, per research awarded, whereas the ASAN organization makes a concerted effort in the fact sheet on their home page to discredit autism speaks with misinformation, that can clearly be refuted, as the standards they criticize for autism speaks are the same high standards that the organization they endorse, ASA, meets or falls short of, as evidenced in the links below. The truth is there for all to see, there has been no refutation provided against it.

      http://www.rockstarsofscience.org/2010_rockdocs_dawson.htm
      http://en.wikipedia.org/wiki/Geraldine_Dawson

      http://www.autismspeaks.org/science/grants/behavioral-and-functional-neuroimaging-investigations-visual-perception-and-cognition

      http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf
      http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=8321
      http://www.autism-society.org/about-us/board-advisors/board-of-directors.html

      When one attacks the mission of autism speaks one attacks both those whom care about individuals with autism spectrum disorders, whom struggle with symptoms and co-morbids associated with those disorders, as well as those whom work in the organization and are funded by the organization to continue research into all areas of the spectrum, among those whom are evidenced as diagnosed with autism spectrum disorders, receiving research funding, regardless of political ideologies associated with a cure per the good work they do to provide a better understanding of the entire spectrum.

      There is no fine line between us and them, per the overall spectrum and the autism speaks organization as well as the millions that support the organization in dollars, volunteer work, or spirit, it is in part we, regardless if one can see that reality or not.

      It is extremely difficult to break human illusion, but I would hope that science oriented people can assess facts and move on in a positive direction. But, it is more than obvious that not everyone with autism is science oriented. In fact the online autistic communities, when informally surveyed often score high in measures of schizotypal/magical thinking. It is also evident in discussion on psi phenomenon, and UFO's, but interestingly, not nearly as evident when religion is discussed. There is likely a social component in the mix, that makes the difference.(yardstick anonymous here; this should be the first reply back as thsi comment was lost in cyberspace, earlier:)

      Delete
    3. @ vorya Yarow in response to comment below: I don't appreciate your comments about my child, nor your continued insistence that I am anyone other than another person diagnosed with an autism disorder commenting on the Autism speaks controversy on this blog. However, I have remained above the fray of attacking you as a human being, through insinuation and will continue to restrict my comments to the facts. It is evidenced that autism speaks restricts their 2012 research goals, and does not fund unrestricted research on autistic children through those goals as evidenced in the brief quote below from the link that also provides detailed examples of the restrictions for the 2012 research. I have made no intentional claims of falsehood, and you have refuted none of the evidenced facts I have presented with counter evidence. Your personal insinuations about me as a human being, appear to be an attempt to discredit the evidenced information I provide instead of discussing it and refuting the evidenced information, if you are able to counter it with alternate evidenced information.

      http://www.autismspeaks.org/sites/default/files/documents/science-grants/2012_research_emphasis_areas_general__1_17.pdf

      "Autism Speaks 2012 Research Emphasis Areas
      Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and treatment of autism or its disabling symptoms. Our mission is to improve the future for all who struggle with autism spectrum disorders. In support of that mission we provide funding along the entire research continuum ‐‐ from discovery to development to dissemination ‐‐ for innovative projects that hold considerable promise for significantly improving the lives of persons with autism.
      Autism Speaks research funding will be restricted to projects that address one of the following priorities:

      • Understand environmental risk factors and their interaction with genetic susceptibility to
      enable prevention and improve diagnosis and treatment
      • Discover biomarkers that can improve risk assessment and subtype stratification that will allow
      for an individualized approach to treatment
      • Improve quality of life through more effective medicines, behavioral interventions, and technologies
      • Enhance diagnosis and treatment of underserved and under‐studied populations, specifically,
      o Nonverbal persons with ASD
      o Ethnically‐diverse and/or low resource communities
      o Adults
      o Those with medical co‐morbidities
      • Disseminate and implement evidence‐based clinical practices to the broader community worldwide"

      (To the author of the articles, sorry if you get a duplicate email message again, but the internet site, once again, did not retain my first published comment for this response to Vorya Yarrow.)

      Delete
  12. I would not be alive if I didn’t know how to recognize the tracks of my enemy. Humble I am in the eyes of my Mother Death.

    But enough of it.

    This message is for you , my brothers and sisters, and those of us who are all of it. This was your first Battle against Autism Speaks - the first Face to Face Battle.

    It came at you – AS Anonymous - and you stood your ground, and it is retreating. See the way it exits. Look carefully. Here is your enemy revealed. See the way it is retreating – under a human skin – a humble person with autism. See the way it brings up a dead child to gain the sympathy of the outsider (if only research was done before, it could have been alive). See the untold part (an unrestricted research on autistic children). See the bait he covers in truth and praise - the hook of disability. See the way it attacks at the end - a caretaker and researcher for us.

    “No fine line between us and them” – it’s his motto - remember that. That’s the way he operates. The truths and lies intermixed, lies hidden behind truths. We must learn to recognize it instantly, by heart. We must learn to recognize it, and learn how to reveal it to the world. Read it carefully, forward and backward, and in time sequence – recognize his Truths and Lies. His is a trail of truths and lies. He’s a master of mixing them; follow his trail; the truths and lies intermixed - the truths leading to a Lie. See the way it is done. Learn from it. We don’t know how to lie, but we must learn about it.

    Study the tapestry of this battle; study all the tracks; those made by you and those made by AS Anonymous. Study the way it moves, its timing, strengths and weaknesses, study every word, every meaning - the truths and the lies intermixed together. Make sure to remember.

    This was just a skirmish, and more will be coming. The Truce that was offered is not yet. But we are coming together and becoming stronger.

    This battle, this little battle, just a skirmish, we won. We won because we stood our ground.

    4Raven,
    Vorya Yarow,
    At your service

    PS. I’ll be soon sending to you my next AC dispatch.

    ReplyDelete
    Replies
    1. @ vorya Yarow: I don't appreciate your comments about my child, nor your continued insistence that I am anyone other than another person diagnosed with an autism disorder commenting on the Autism speaks controversy on this blog. However, I have remained above the fray of attacking you as a human being, through insinuation and will continue to restrict my comments to the facts. It is evidenced that autism speaks restricts their 2012 research goals, and does not fund unrestricted research on autistic children through those goals as evidenced in the brief quote below from the link that also provides detailed examples of the restrictions for the 2012 research. I have made no intentional claims of falsehood, and you have refuted none of the evidenced facts I have presented with counter evidence. Your personal insinuations about me as a human being, appear to be an attempt to discredit the evidenced information I provide instead of discussing it and refuting the evidenced information, if you are able to counter it with alternate evidenced information.

      http://www.autismspeaks.org/sites/default/files/documents/science-grants/2012_research_emphasis_areas_general__1_17.pdf

      "Autism Speaks 2012 Research Emphasis Areas
      Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and treatment of autism or its disabling symptoms. Our mission is to improve the future for all who struggle with autism spectrum disorders. In support of that mission we provide funding along the entire research continuum ‐‐ from discovery to development to dissemination ‐‐ for innovative projects that hold considerable promise for significantly improving the lives of persons with autism.
      Autism Speaks research funding will be restricted to projects that address one of the following priorities:

      • Understand environmental risk factors and their interaction with genetic susceptibility to
      enable prevention and improve diagnosis and treatment
      • Discover biomarkers that can improve risk assessment and subtype stratification that will allow
      for an individualized approach to treatment
      • Improve quality of life through more effective medicines, behavioral interventions, and technologies
      • Enhance diagnosis and treatment of underserved and under‐studied populations, specifically,
      o Nonverbal persons with ASD
      o Ethnically‐diverse and/or low resource communities
      o Adults
      o Those with medical co‐morbidities
      • Disseminate and implement evidence‐based clinical practices to the broader community worldwide"

      (To the author of the articles, sorry if you get a duplicate email message again, but the internet site, once again, did not retain my first published comment for this response to Vorya Yarrow.)

      Delete
    2. @ vorya Yarow: I don't appreciate your comments about my child, nor your continued insistence that I am anyone other than another person diagnosed with an autism disorder commenting on the Autism speaks controversy on this blog. However, I have remained above the fray of attacking you as a human being, through insinuation and will continue to restrict my comments to the facts. It is evidenced that autism speaks restricts their 2012 research goals, and does not fund unrestricted research on autistic children through those goals as evidenced in the brief quote below from the link that also provides detailed examples of the restrictions for the 2012 research. I have made no intentional claims of falsehood, and you have refuted none of the evidenced facts I have presented with counter evidence. Your personal insinuations about me as a human being, appear to be an attempt to discredit the evidenced information I provide instead of discussing it and refuting the evidenced information, if you are able to counter it with alternate evidenced information.

      http://www.autismspeaks.org/sites/default/files/documents/science-grants/2012_research_emphasis_areas_general__1_17.pdf

      "Autism Speaks 2012 Research Emphasis Areas
      Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and treatment of autism or its disabling symptoms. Our mission is to improve the future for all who struggle with autism spectrum disorders. In support of that mission we provide funding along the entire research continuum ‐‐ from discovery to development to dissemination ‐‐ for innovative projects that hold considerable promise for significantly improving the lives of persons with autism.
      Autism Speaks research funding will be restricted to projects that address one of the following priorities:

      • Understand environmental risk factors and their interaction with genetic susceptibility to
      enable prevention and improve diagnosis and treatment
      • Discover biomarkers that can improve risk assessment and subtype stratification that will allow
      for an individualized approach to treatment
      • Improve quality of life through more effective medicines, behavioral interventions, and technologies
      • Enhance diagnosis and treatment of underserved and under‐studied populations, specifically,
      o Nonverbal persons with ASD
      o Ethnically‐diverse and/or low resource communities
      o Adults
      o Those with medical co‐morbidities
      • Disseminate and implement evidence‐based clinical practices to the broader community worldwide"

      (To the author of the articles, sorry if you get a duplicate email message again, but the internet site, once again, did not retain my first published comment for this response to Vorya Yarrow.)

      Delete
    3. @ vorya Yarow: I don't appreciate your comments about my child, nor your continued insistence that I am anyone other than another person diagnosed with an autism disorder commenting on the Autism speaks controversy on this blog. However, I have remained above the fray of attacking you as a human being, through insinuation and will continue to restrict my comments to the facts. It is evidenced that autism speaks restricts their 2012 research goals, and does not fund unrestricted research on autistic children through those goals as evidenced in the brief quote below from the link that also provides detailed examples of the restrictions for the 2012 research. I have made no intentional claims of falsehood, and you have refuted none of the evidenced facts I have presented with counter evidence. Your personal insinuations about me as a human being, appear to be an attempt to discredit the evidenced information I provide instead of discussing it and refuting the evidenced information, if you are able to counter it with alternate evidenced information.

      http://www.autismspeaks.org/sites/default/files/documents/science-grants/2012_research_emphasis_areas_general__1_17.pdf

      "Autism Speaks 2012 Research Emphasis Areas
      Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and treatment of autism or its disabling symptoms. Our mission is to improve the future for all who struggle with autism spectrum disorders. In support of that mission we provide funding along the entire research continuum ‐‐ from discovery to development to dissemination ‐‐ for innovative projects that hold considerable promise for significantly improving the lives of persons with autism.
      Autism Speaks research funding will be restricted to projects that address one of the following priorities:

      • Understand environmental risk factors and their interaction with genetic susceptibility to
      enable prevention and improve diagnosis and treatment
      • Discover biomarkers that can improve risk assessment and subtype stratification that will allow
      for an individualized approach to treatment
      • Improve quality of life through more effective medicines, behavioral interventions, and technologies
      • Enhance diagnosis and treatment of underserved and under‐studied populations, specifically,
      o Nonverbal persons with ASD
      o Ethnically‐diverse and/or low resource communities
      o Adults
      o Those with medical co‐morbidities
      • Disseminate and implement evidence‐based clinical practices to the broader community worldwide"

      (To the author of the articles, sorry if you get a duplicate email message again, but the internet site, once again, did not retain my first published comment for this response to Vorya Yarrow.)

      Delete
  13. I don't appreciate you making light of my child's death, or making light of the fact that I am an individual diagnosed with autism. However I choose not to personally attack you, instead I choose to provide evidenced facts associated with this issue.

    Autism Speaks does not have unrestricted research on individuals with autism. Their research is restricted and evidenced on their website, with full disclosure.

    These are the organizations evidenced research restrictions for 2012, quoted below where they are providing research that supports the entire spectrum. The quote below provides a brief overview of their research, and the link provides a comprehensive list of the examples of the research the organization is funding this year. One can judge the merits of that research for themselves.

    "Autism Speaks 2012 Research Emphasis Areas

    Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and treatment of autism or its disabling symptoms. Our mission is to improve the future for all who struggle with autism spectrum disorders. In support of that mission we provide funding along the entire research continuum ‐‐ from discovery to development to dissemination ‐‐ for innovative projects that hold considerable promise for significantly improving the lives of persons with autism.

    Autism Speaks research funding will be restricted to projects that address one of the following priorities:
    • Understand environmental risk factors and their interaction with genetic susceptibility to
    enable prevention and improve diagnosis and treatment
    • Discover bio-markers that can improve risk assessment and subtype stratification that will allow for an individualized approach to treatment
    • Improve quality of life through more effective medicines, behavioral interventions, and
    technologies
    • Enhance diagnosis and treatment of under served and under‐studied populations, specifically,
    o Nonverbal persons with ASD
    o Ethnically‐diverse and/or low resource communities
    o Adults
    o Those with medical co‐morbidities
    • Disseminate and implement evidence‐based clinical practices to the broader community worldwide"

    http://www.autismspeaks.org/sites/default/files/documents/science-grants/2012_research_emphasis_areas_general__1_17.pdf

    I have not provided no intended false claims. I challenge you to refute any fact I have presented with third party evidence associated with this autism speaks controversy. You provide a false claim in the assertion that I am someone other than just another individual diagnosed with an autism spectrum disorder commenting in this blog. Your responses appear to be ones to inspire fear in other individuals of an autism advocacy organization evidenced to do good things for individuals diagnosed with autism spectrum disorder, as well as an avenue of beneficial support for the families, friends, and others whom are concerned for those that do struggle with symptoms and co-morbidities associated with autism spectrum disorders.

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  14. @ vorya Yarow: I don't appreciate your comments about my child, nor your continued insistence that I am anyone other than another person diagnosed with an autism disorder commenting on the Autism speaks controversy on this blog. However, I have remained above the fray of attacking you as a human being, through insinuation and will continue to restrict my comments to the facts. It is evidenced that autism speaks restricts their 2012 research goals, and does not fund unrestricted research on autistic children through those goals as evidenced in the brief quote below from the link that also provides detailed examples of the restrictions for the 2012 research. I have made no intentional claims of falsehood, and you have refuted none of the evidenced facts I have presented with counter evidence. Your personal insinuations about me as a human being, appear to be an attempt to discredit the evidenced information I provide instead of discussing it and refuting the evidenced information, if you are able to counter it with alternate evidenced information.

    http://www.autismspeaks.org/sites/default/files/documents/science-grants/2012_research_emphasis_areas_general__1_17.pdf

    "Autism Speaks 2012 Research Emphasis Areas
    Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and treatment of autism or its disabling symptoms. Our mission is to improve the future for all who struggle with autism spectrum disorders. In support of that mission we provide funding along the entire research continuum ‐‐ from discovery to development to dissemination ‐‐ for innovative projects that hold considerable promise for significantly improving the lives of persons with autism.
    Autism Speaks research funding will be restricted to projects that address one of the following priorities:

    • Understand environmental risk factors and their interaction with genetic susceptibility to
    enable prevention and improve diagnosis and treatment
    • Discover biomarkers that can improve risk assessment and subtype stratification that will allow
    for an individualized approach to treatment
    • Improve quality of life through more effective medicines, behavioral interventions, and technologies
    • Enhance diagnosis and treatment of underserved and under‐studied populations, specifically,
    o Nonverbal persons with ASD
    o Ethnically‐diverse and/or low resource communities
    o Adults
    o Those with medical co‐morbidities
    • Disseminate and implement evidence‐based clinical practices to the broader community worldwide"

    (To the author of the articles, sorry if you get a duplicate email message again, but the internet site, once again, did not retain my first published comment for this response to Vorya Yarrow.)

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  15. This comment has been removed by the author.

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  16. This comment has been removed by the author.

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  17. Kate Mia. That is a Human Name.
    That's a Start.

    Where do we go from here?

    Vorya Yarow,
    At your service

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  18. Sorry for all the repetitive responses, as there was a glitch that prevented me from posting, that Lydia was able to fix and has resulting in all the attempts that I made to re-post as published at one time.

    As contacting you previously, just attempting to respectfully discuss a controversial issue, and think I have provided about as many facts as I am aware of in regard to the autism speaks controversy issue. I don't see the same bad in the organization that you do, but it is human nature to see things different ways. And am also open to anything of concern that the organization is reasonably evidenced as currently doing harm to anyone. Other than that there appears to not to be much left of concern on this issue for me at this time, but there are a thousand other interesting issues in regard to living as an individual on the spectrum other than autism speaks.:)

    Perhaps we will find ourselves on the same page on those issues some time in the future.

    Also, at your service

    Kate

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  19. Yes, Kate Mia - some time in the future, I'd like you on our side.

    Vorya Yarow

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  20. To All of You.

    You know who I am. I came to you and you let me in. I came to you thirsty and tired of the road and you took me into your shelter and gave me solace and strength. You led me in Jim, among your people, a wandering stranger, and you restored me - I am in awe of You.

    I have more than one name. The one that is growing in me now is stronger than others. I did not reveal it when I wandered into your enclave. The name I gave you is the name I grew up with as a child. It is a gentler name.

    I was raised by Autistic people; there were many of them – in my family, and those who cared for me; simple people - shepherds among them. They made sure I grow to become one of them. There was no mention of it; they did not know the term. And I have wandered through the world, seeking it. But I’m not a shepherd. The shepherd has come of age and is walking towards us. I see his coming. I know him. He is all of you.

    How do I recognize lies by heart? Here, in this frozen by pen trail of the AS Anonymous are lies at large -“Autism Speaks supports GLOBAL biomedical RESEARCH into the diagnosis, causes, PREVENTION, and treatment of AUTISM or its disabling symptoms”.

    GLOBAL –a heavy concrete shadow hanging over us - spreading like a dark dense net that none would escape; it is threatening us all - a Lie hiding behind a six-letter word. RESEARCH – I see a rat on a table next to surgical tools, twitching, I see monkeys in cages with electrodes in their open brain, I see a child taken away from the childhood, waiting his turn - what will it be? You are the child waiting in the lab. PREVENTION – against you? Who is it for? For your father and mother? No, it’s another Lie. It is the hive, the ANT House that wants the uniformity of an aNT. A raging fire is in my heart now as I come to this – “treatment of AUTISM”. The Ant House – the Uniformity - that sees me as deformed. I’m a threat – I’m different.

    It’s not supposed to be there – this raging fire – the red of my blood, they say. Perhaps - perhaps it is not an autistic trait, but it is in me this raging fire. And I will not rest.

    Yours,
    Vorya Yarow

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  21. In your post, you assert that statistics comparing the incidence rate of autism to conditions such as AIDS are "offensive and demeaning." On behalf of the millions of people living and THRIVING with HIV/AIDS in this country, I think that it is disrespectful, appalling, and hypocritical that you, a fellow disabled person, are so bothered by being compared to us. Are we monsters? Animals? Lepers? No, we are individuals worthy of dignity just as autistics are. Just like autistics, HIV+ individuals are misunderstood, stigmatized, discriminated against, pitied as children and then treated with disdain as adults, etc. We have a strong, proud international community of HIV advocates working to effect change. I was born with HIV and it is a part of who I am. It affects how I think (HIV crosses the blood-brain barrier and as such can have neurological impact on many), how I live, and I am not ashamed of it. Many of us, like autistics, may need some supports and/or modifications for optimized function (in our case, anti-retroviral medication; in the case of autistics, perhaps means to aid with communication for some, and a variety of other things for both HIV+ people and autistics). But we are here and shouldn't have to endure others' fear and vitriol. I can assure you that however Autusm Speaks intends it, there is NOTHING "demeaning and offensive" about living with HIV! So they might owe autistics an apology--but you owe the HIV community one...for doing the same thing to us that you claim Autism Speaks and much of society does to you.

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    1. Anon: Most people in the larger community of those on the autism spectrum and those that care about individuals on the autism spectrum, see no offense in this comparison of statistics as they are all noteworthy concerns worthy of research to help make people's lives better.

      At one point in time there was little recognition give to research to attempt to help people with autism spectrum disorders. This was the situation in the beginning of the AID's epidemic as those diagnosed with that condition felt disenfranchised from the world, in a similar manner as the parents of children with conditions like regressive autism felt, as there were no effective treatment answers being provided to parents as to why or what could be done, and no significant efforts being made in that direction in research. That changed for AIDS and it is changing for some whom struggle with Autism, because there were those that championed the effort as there were in the AID's community.

      The message you bring is a valuable one that hopefully could provide a larger perspective of the issue for others. I didn't see autism speaks comparison in statistics as offensive because I don't see disorders or disease as reducing the value of human beings. The human spirit is the champion as displayed by individuals like Stephen Hawkins with ALS. That is a disease that can physically incapacitate an individual but the human spirit is evidenced as having the potential to go on as strong as ever, through accommodations that have been provided by research and technology.

      However, I will go one step further, as your own analogy of monsters may be an appropriate one, as mythical beings per the dehumanizing element, but in my opinion animals and lepers don't fall to a level deserving dignity lower than human beings, with or without disorder or disease, as we all come and continue into this life per the accord of what is.

      R/Kate

      Delete
    2. Anon, the problem with comparing autism to AIDs, or cancer, or diabetes is that a lot of autistics do not think of their autism as having something wrong with them. Many think of it as a divergence.

      Delete
  22. Actually, most of the Autistics, and many of the parents, I know do find a LOT of offense in the way these groups use this sort of statistic. To Anonymous who is part of the HIV/AIDS community, and to others who may have felt hurt or offended at how I approached the problem of alarmist statistics that are intended to strike fear into the hearts of people (and make them open their wallets), I apologize for comments that can be found on my blog, that are less than thoughtful regarding other diseases, conditions. I am writing a blog entry on that topic as part of my continuing crusade against statistics about diseases/disorders/disabilities being used against (and I do perceive it as *against*) people with any condition other than "healthy and normal," whatever that is.

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    1. Paula,

      Used as a method to gain empathy and concern from others as all charitable organizations do yes, it is definitely evidenced as such, but there is absolutely no evidence that it is an awareness effort intended with malicious intent or disregard against any person. As obviously, that was not the intent of the author of the article above toward any human being.

      Disorder and/or disease was focused on instead of a person, the way most of the country focuses on any disorder or disease; there is no malicious intent or disregard for the human being, until one refuses to refrain from speaking about the offense that is evidenced as taken.

      I think by now that autism speaks understands those statistics have upset a significant number of people and have moved toward football and golf statistics, to try to adapt to what is evidenced as a concern among some in the larger autism community, but it is a matter of scale of issue for awareness among the general public, and those government statistics are related to children in classes for the developmentally disabled receiving support, some of which will likely lead fulfilling lives in part because of the results of advancements in research and technology.

      But, that doesn't come free without concern and support from the general public. It is more likely for all whom are concerned that golf and football statistics may be a better way to get the scale of the issue across to the general public. But at this point, government announced statistics of 1 in 88 overall, and 1 in 29 among males in states like New Jersey are close enough to generate concern among those in the general public, where statistical comparisons are no longer needed to gain an understanding of the scale of the issue, to compel people to support missions that are evidenced as helping people on the spectrum, that organizations like autism speaks provides.

      The direst potential would be if few people in the general public cared, which was a closer reality before autism speaks came onto the scene. They provide awareness and concern in countries that have historically had little to no awareness or concern, to generate efforts to help individuals on the spectrum. That wouldn't be possible without the efforts of charitable organizations like autism speaks.

      R/Kate

      Delete
  23. Paula,
    I applaud you for having the integrity and the courage to do this. Your apology is enthusiastically accepted. Thank you for championing the cause of ALL people being worthy of respect, including those of us who are HIV+.

    Kate,
    I was speaking colloquially (and emotionally) in my reference to "animals" and "lepers" during my post. But it was not my intent to disrespect either nor imply that anyone should, so I retract those words and apologize to anyone I might have offended with them.

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  24. AIDS People. My apologies - I did not know that you have evolved. I did not know that you have become People. I didn't know that you're THRIVING, but I never doubted that you have Life; and those born with AIDS - the only Life they Ever knew. You are the Ultimate fighters. And we are not yet there.

    But we - the two of us -you and Autistic people - the A&A People – both are the outcasts of the outcasts. The outcasts of the outcasts - we both know what it means.

    Yet we may be different, in one very important way. Given a wish, would you Person with AIDS, wish it away; or are you already an evolved AIDS Person and you prefer to live life on the Edge?

    We are two people in the same boat, outcasts of the outcasts, who need to stand together and fight the same fight, even that all the while - you may need cure - while we don't - that is who we are. I don’t, all who I know don’t, and all those who are us all. Yes, we are not yet where you are, AIDS People, as fighters for Life, but we know who we are. Give us - Autistic people - that credit.

    Yours,
    Vorya Yarow

    PS. To Autistic People - Lessons of these latest tracks:
    Left and right, two steps - two blows, and then right and left – moves of the fighter. Two of the same one. Who is it, why, reason, purpose, attention to words, distortions, where they lead to.
    Hint: I can't find the offensive phrase re. AIDS people, anywhere in Lydia's post; a distortion used as a starter; not something AIDS Person would do.

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  25. Quote from the owner of this blog:

    "Furthermore, Autism Speaks must apologize for previous dehumanizing and offensive language in organization-sponsored materials...and the constant comparisons of the likelihood of having autism to having...AIDS."

    As I am typing this on a phone and not a computer, I am unable to easily cut and paste in this comment box. Which is likely the reason for my earlier error. The comparisons of having autism and AIDS were apparently "dehumanizing" as opposed to "demeaning," which is actually even worse.

    We have ALWAYS been people, thank you. And please do not refer to us as "AIDS People.". I respect the identity first usage of Autistic on this blog; please refer to me and those I speak for with similar respect. I am HIV+ and I am a part of the HIV/AIDS community. Period. And I am not some silly troll masquerading on this blog as anyone but who I am. I am not dually posting as you have childishly and superstitiously accused me of. Simply ask the blog owner if my IP address is the same as the earlier "Anonymous" posters if you need verification. This is my third, and last comment on this thread, and these are the ONLY comments that I have EVER made on this blog.
    I don't wish to continue a degrading exchange any longer with you, so I will end now. Best wishes to the Autistics and their supporters, and thank you to the blog owner for the opportunity to comment here. Good day all.

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    1. I'd like to point out two things about the quote that you pulled from my post above --

      1.) The phrase "comparisons of the likelihood of having autism..." is modified by the adjectives "dehumanizing and offensive," but both adjectives do not necessarily apply to every example listed thereafter. I am not referring to all of those comparisons as both dehumanizing and offensive, though plenty of them are.

      Furthermore, Autism Speaks must apologize for previous dehumanizing and offensive language in organization-sponsored public materials, including the rhetoric used in "Autism Every Day," "I Am Autism," and the constant comparisons of the likelihood of being Autistic to the likelihood of a child dying in a car crash, being struck by lightning, or having cancer, diabetes, or AIDS. Additionally, Autism Speaks must repudiate all remarks that appear to lend credence to the debunked vaccine-causation myth.

      2.) People with chronic health conditions, including people who are HIV positive or who have AIDS, do face many of the same types of stigma and barriers to access as people with disabilities. I recognize that, and I do wish that the stigma against people with chronic health conditions, such as AIDS or HIV, would also lessen and disappear much as I wish that the stigma against people with disabilities, including Autistic people, would lessen and disappear. It is offensive to compare being Autistic to having AIDS or being HIV positive because the two cannot be compared -- one is a chronic health condition and the other is a disability. To make the comparison does a disservice to people from both groups, and to people who may be both simultaneously, because it juxtaposes two things that have no innate relationship or causal relationship whatsoever.

      Delete
    2. Lydia,
      Per US law, AIDS was determined as a disability by the Supreme Court in 1998, where individuals diagnosed with HIV/AIDS are afforded protection under the ADA.
      [url]http://www.glad.org/30years/case_apr.html[/url]

      Per US code and notice of EEOC Autism, Cancer, Diabetes, and HIV/AIDS are all listed among impairments for which an individualized assessment “can be conducted quickly and easily, and that will consistently result in a determination that the person is substantially limited in a major life activity” in meeting the ADA legal definition of disability.
      [url]http://www.eeoc.gov/laws/regulations/adaaa-summary.cfm[/url]

      The comparison is technically not offensive, per your stated rationale of offense, because all of these conditions are equally defined by law as consistently meeting the legal definition of disability per the ADA, when assessed for protection under the law.

      However, anyone can take offense to almost any verbiage presented, depending on perception, but in this case there is no evidenced offense intended by autism speaks.

      Autism Speaks has already apologized publicly for any offenses taken in their portrayals for their awareness campaign, but assured that none were intended as offensive toward anyone.

      No one can require you to apologize for offense taken by your description of what you see as an offensive comparison that most people don't see as offensive because they do know that autism spectrum disorders for some can be just as disabling or more disabling for some directly or indirectly per the symptoms of the disorder as compared to the other disabling conditions listed for statistical comparison.

      If one doesn't think that clinical features associated with autism can lead to an indirect result of death, one need look no farther than the recent incident of a 7 year old girl on the spectrum that jumped out of a third story window with apparently no expressed understanding of the potential consequences, where fortunately there was someone who cared enough to catch her, as a hero.

      I experienced a similar issue when I was a child.

      My hero was an individual that stopped to take me out of the middle of a road that I had wandered/ran into when my mother took her eyes off me for a few seconds. She couldn't understand why I would do such a thing, or how I could have crossed the span of distance that I did in a matter of seconds, but neither could I at that age. The man in the vehicle chastised my mother for being a bad parent. This was close to five decades ago, before it was understood that I was on the spectrum or there was an awareness of a clinical feature of wandering associated with the spectrum.

      The potential prevention of this happening is enhanced through research and awareness of the concern of this identified clinical feature associated with autism

      [url]http://www.awaare.org/[/url]

      Several people have apologized in these posts for unintended offenses in communication, including autism speaks, per another public avenue. A lesson that can be learned is to identify the miscommunication, apologize for unintended offenses and move on to communication that fewer will find offense to.

      Autism Speaks has moved on to football and golf statistics.

      I haven't heard anyone complain about that yet, so perhaps it is a better method of providing awareness to the general public of the scale of the issue, with the potential of offending fewer people that may see offensive intent where no one is intended.

      R/Kate

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    3. Lydia,

      My detailed response was lost. I have sent an email to you, for a request to post it, as it appears to be identified as spam, because of the evidenced links I provided

      But just for brief clarification without the evidenced links, until you receive the request to post the comment, Autism is listed among several different disorders/diseases including HIV/AIDS, Cancer, and Diabetes that are identified in US Code as impairments when assessed as disability under the ADA, that consistently meet the criteria for the ADA definition of Disability.

      The US Supreme Court in a ruling in 1998, identified AIDS/HIV as a disability where individuals diagnosed with AIDS/HIV are covered under the Americans with Disabilities Act.

      So, in short per government sources HIV/AIDS and Autism are both considered disabilities, and can reasonably be compared as such.

      Your rationale of offense taken, on the comparison of the two conditions, per your assertion that Autism is a disability and people with HIV/AIDS are not included among disabled individuals, is not supported by the evidence that I identify, and linked sources provided in my post that is not yet published.

      Apparently you were not aware that HIV/AIDS is legally considered a disability in the same category of Autism. Hopefully the evidence I have provided, per your individual perception, will provide a clearer perception of autism speaks and the evidenced hundreds of other organizations that make this prevalence comparison to provide a better understanding to the general public of the scale of the issue, as well as some organizations that detail the disparity of funding of research into the different identified conditions occurring in childhood.

      R/Kate

      R/Kate

      Delete
  26. I wrote a response that somehow got lost in cyberspace. Maybe it will eventually appear; I don't know. In case it does, I will not repeat it in its entirety. However, please refer to the original post in this thread in which it was stated that Autism Speaks must apologize for "dehumanizing" (which I accidentally typed as "demeaning") and "offensive" items in its organization-sponsored materials. Comparisons of the likelihood of having autism to having AIDS was EXPLICITLY stated in her post, along with "I am Autism," etc. please read it for yourself. Moreover, please do not refer to me as "AIDS People," because for one I am not a plural entity by one person speaking for my cause, and two, even in the singular I am not an "AIDS Person.". I am an HIV+ person, just as the blog owner is an Autistic person and not a "Pervasive Development Disorder" Person. Please respect MY right to identify MYSELF as how I choose and not how YOU want to call me...just as I respect the identity-first right of Autistics. Furthermore, we have ALWAYS been people. And finally, ask the blog owner if my IP address matches the numerous other "Anonymous" posters on this blog. I am an adult and I do not have the interest nor the time to masquerade as anyone other than myself regardless of whatever ridiculous conspiracy theory you wish to ascribe to me. I only posted to make a point, and I find your insinuations degrading. Do you, who cannot respect others with disabilities, think that this is a successful way of getting people to respect your cause? Do you think the blog owner, whose quest appears to be to advocate for respect for Autistics, would agree with your manner of addressing me for merely making a point? I sincerely doubt it. Best of luck with your endeavors, I am ending.

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    1. For some reason, people's non-spam comments are being auto-marked as spam. I have no idea why. I'm having to manually go in to approve them; normally comments should be posting automatically.

      Delete
    2. Anonymous, thank you for your comments above. I have not had time to read all the additional comments since I wrote my post (link below) because of a work deadline to which I must return. I do want to say that I am not assuming that Lydia's intent was to consider people who have other disabilities and differences, or their disabilities or conditions as "offensive" in themselves. What is offensive is the way that Autism Speaks and others conflate all these disabilities (and by extension, all disabilities) as something undesirable and to be eliminated or cured. My post is here for anyone to read: http://paulacdurbinwestbyautisticblog.blogspot.com/2012/07/what-do-autism-pediatric-aids-cancer.html Also, a somewhat related post from last year is here: http://www.shiftjournal.com/2011/04/29/when-is-a-disability-not-a-disability-autism-speaks-has-the-answer/

      Delete
    3. Paula,

      I attempted to respond on your blog, but apparently you did not feel my comment met the standards of your blog, so I will comment here.

      Note: the link is formatted in hopes that it won't be screened for spam.:)

      blogdotautismspeaksdotorg/tag/iacc/

      The quote below is from the IACC Inter-agency Autism Coordinating Committee's description of the scale of issue of autism per the government's response to the issue, and the responses of concern of committee members over the inclusion of words like pediatric aids and cancer. It is clear that the opposition from members supporting the neurodiversity movement has been one of offense of disrespect of the statistical comparison because of perceived severity rather than scale of issue. The responses below in the second quote were highlighted by Geri Dawson from the Autism Speaks organization.

      "Today, autism is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined, and the increasing numbers of children being diagnosed with autism has created a national health emergency. In a September 30, 2009 speech at the National Institutes of Health, President Obama specifically cited autism, along with cancer and heart disease, as one of three health conditions targeted for major scientific research investment through the American Recovery and Reinvestment Act. The President expressed his hope that research into genetic and environmental factors would result in strides in early intervention, treatments and therapies to help people affected by autism achieve their fullest potential (hot button words bolded)."

      "The words that some members were concerned about were “childhood cancer, juvenile diabetes and pediatric AIDS.” They objected to the notion of comparing autism to diseases such as these and felt such a comparison was disrespectful to people with autism. After all, autism is not a terminal disease like cancer, one person pointed. Others noted that the comparison was meant only to convey the scale of the problem, not to imply that autism was a terminal disease. They said that the comparison was meant to convey the huge number of people who are affected by autism. The discussion continued until Tom Insel finally pointed out that the committee had spent 30 minutes discussing the first sentence of the plan, and we still had a lot of work to do. A vote was then taken and the revision was adopted.."

      It is more than obvious that the intent of comparing statistics of other conditions is to provide a scale of the issue, as one that merits action, not one of disrespect toward any American Citizen, the way the issue is described by the IAAC. This is an advisory board to the department of Health and Human Services. They would not approve this description if it was deemed reasonably offensive to any group of Americans that were disabled by a condition, as the revision was approved and adopted.

      And as you stated in your blog there are thousands of hits through a search on the internet that can be found with others that describe the issue the same way. This amounts to hundreds of organizations that are not attempting an intent of offense toward anyone, by describing the scale and urgency of the issue, of one that merits concern and action by those that care and can help to ensure that the issue is appropriately addressed.

      R/Kate

      Delete
  27. According to the US government, I am a disabled individual. Chronic health conditions can be disabling. So I don't understand why the comparison is offensive. Even if one accepted the logic that the two are apples and oranges, it still doesn't explain what is so offensive about the comparison. Inaccurate in your opinion, yes. But where does the offense come in? In addition, nothing was made of the use of the word dehumanizing. Why is the comparison dehumanizing if we are to follow the same logic? Because one is a developmental disability and one is a disabling chronic illness? Again, why the choice of words?
    The rationale that everything that followed the adjectives was not necessarily dehumanizing and offensive doesn't make sense. It would have been easy to remove the items which were not considered offensive and dehumanizing from the list rather than word it in a way that nearly anyone who views it would perceive it to mean exactly what I and the others who have posted about it have. If I have food allergies to peanuts and dairy and someone offers me a dessert that has peanuts, dairy, and soy, I'm not going to say, "I can't eat it because I'm allergic to the ingredients it contains, including peanuts, dairy, and soy.". No, I'm going to omit the food that isn't relevant to the conversation. It doesn't make sense.

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  28. Kate, I have to disagree with your statement (quoted below):

    "It is more than obvious that the intent of comparing statistics of other conditions is to provide a scale of the issue, as one that merits action, not one of disrespect toward any American Citizen, the way the issue is described by the IAAC. This is an advisory board to the department of Health and Human Services. They would not approve this description if it was deemed reasonably offensive to any group of Americans that were disabled by a condition, as the revision was approved and adopted.

    And as you stated in your blog there are thousands of hits through a search on the internet that can be found with others that describe the issue the same way. This amounts to hundreds of organizations that are not attempting an intent of offense toward anyone, by describing the scale and urgency of the issue, of one that merits concern and action by those that care and can help to ensure that the issue is appropriately addressed."

    I do not believe that the sole reason that diabetes, cancer, and pediatric AIDS were selected in those statistics was to convey the scope of the problem...I do feel that there was also an alarmist slant, whether intentional or unintentional. And however "effective" those messages may have been, it is still not a respectful manner to get the point across. By NO MEANS am I exonerating Autism Speaks or other organizations of this, and I think Paula's post summarizes it nicely when she shared that these organizations need to use language respectful of ALL people.

    My post is too long, so I will post the next part in a separate comment.

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    2. Anonymous:

      Actually, according to the Autism Speaks website link that Paula provides in her blog, part of the reason those specific disorders/diseases were selected for statistical comparison, is that they receive a great deal more funding than Autism, in addition to the scope of the prevalence of the issue. Since the update of CDC statistics of 1 in 88, Autism Speaks along with several thousand other websites have added the disorders of cystic fibrosis, downs syndrome, cerebral palsy, and muscular dystrophy to the list to provide a greater scope of the issue of prevalence and concern.

      The IAAC, per the quotes from their committee hearing, chose to use those same prevalence facts to describe not only the scope of the prevalence, but to describe what this government advisory agency views as a public health emergency requiring urgent action, so it is reasonable to suggest that there is literally an alarmist stance, in that the advisory agency does see autism as a public health emergency that does warrant urgency of action, which is synonymous language with an alarm to those with the responsibilities and authority in government to take appropriate action in response to the advisory committees recommendations.

      The government advisory agency though, is not using hyperbole in their description, they are serious in the words of urgency/alarm that they do use in the statement.

      And just for clarity the 1 in 88 statistic, is not hyperbole or propaganda as provided in the quote in your statement below, it is based on peer reviewed research supported by the CDC that measures autism among children eight years of age, in classes for the developmentally disabled.

      The government has no clear idea what the statistics are for individuals 18 years of age, at this point, because this demographic of individuals have not been studied. Autism Speaks is funding a three year comprehensive study to determine the statistics of autism in the adult population, and also providing the government a potential more of a more comprehensive methodology to study prevalence of autism spectrum disorders.

      While it might be reasonable to suggest that advisory agency showed less regard for comments of opposition, in favoring language and prevalence comparisons that supported the level of concern expressed, there was no evidence of statements intended of disrespect, and the only disability group that has described significant offense at the prevalence comparisons are among some in the autism community, which were provided the opportunity to express those opposing viewpoints in the committee meeting, which were not weighed as a concern significant enough to change the proposed language.

      R/Kate

      My previous statement was lost in cyberspace, so a duplicate may eventually come, with similar information:)

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  29. Lydia and others,
    But there is another side to the coin. We have big (and not so big) organizations showing disregard to disabled individuals and those with certain diagnoses in these campaigns on one side. But on the other side, we have Autistics, and parents of Autistics, who are offended not merely by the fact that all of these groups have been treated with disregard, but that someone would DARE lump Autistics in with these other groups. That is DISRESPECT and helps to perpetuate stigma. Autistics don't need to throw others under the bus in their quest for civil rights.

    Having read Lydia's reply about this, I still find it very hard to understand how it is offensive to be compared to someone or something that is different from you UNLESS you deep down you feel that there is something inherently worng with the thing you are being compared to.

    I am a member of an ethnic minority group. I am constantly being mistakenly identified as being from one particular culture that I resemble when in fact I am from another. When this occurs, I politely correct the individual. Do I take OFFENSE that they have perceived me as being from a different cultural group that I actually am? No, because the comparison in itself isn't offensive. Perhaps sometimes the frequency in which it occurs is a little annoying, but I am not insulted that they have associated me with group A, even though their association is incorrect and I am really a part of group B. Because I don't have a problem with group A or with anyone assuming that I am part of or like group A outside of the fact that it isn't truly who I am and it would be dishonest for me to represent myself as such. However, if I felt that think negatively of group A, or if I felt negatively myself about group A, then I would likely take offense.

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  30. Part 3:

    When I review the numerous blogs, message boards, and comments within Autistic online groups, Autistic blogs and forums, etc that discuss this topic, what I see is more akin to what Paula has mentioned than what Kate is saying.
    Even in Lydia's post about Georgetown and Autism Speaks it is stated:

    "Autism Speaks regularly issues propaganda in which they say, "The rate of autism is higher than the rate of cancer, childhood diabetes, and AIDS combined," which compares a developmental disability to diseases. Their propaganda states that '1 in every 88 children will be diagnosed with autism.' When we turn eighteen, we don't magically become non-Autistic. 1 in 88 people are Autistic. Autism Speaks would have you believe that we are living tragedies waiting for the day when we can be cured, when nearly every Autistic person I know does not want to be cured and does not believe in this concept of a cure."

    What does that statement imply? Both "developmental delay" and "diseases" are italicized in her post for emphasis. What does one wish to emphasize...that Autistic people are developmentally delayed, but we others are DISEASED. Furthermore, the statement right after that about Autism Speaks' implication that Autistics are "living tragedies" waiting to be cured implies that the people with the conditions listed (cancer, diabetes, and AIDS) are "living tragedies," even if that is not what is meant.

    Words are powerful. This is a well-written blog and I applaud the majority of your efforts even if I do not share all of your views. But I have to say that it looks to me like you are passing the buck. Why not simply find another way to word your criticism of Autism Speaks that is more respectful of those of us who are HIV+ or who have AIDS? Why insist on maintaining that the comparison to us is offensive when it would be so easy to drop this particular rhetoric in favor of one that is more respectful and inclusive? And why not own up to the fact that even if it was not your intention, the way you CHOSE to word your posts could VERY EASILY be taken to mean that you, and presumably other Autistics, could and should be feel that it is "dehumanizing and offensive" that autism and HIV/AIDS are being compared to one another?

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  31. Greetings.

    We should not get lost in the exchange of words; words can easily lead to ambiguities and lies. We should thank Kate Mia for showing us this, and how this war will be fought.

    Disorder, Disability, Research, Prevention, AIDS, Abortion... These will be our battlegrounds. We must have crystal clear understanding of where we stand in regard to each and where each stands in regard to our fight. And our arguments must be crystal clear, short and logical, and going straight to the heart of people – truths leading to true understanding. We must develop it in order to win this war.

    This war will be fought in the Public Eye, and we must make sure to win it. We should make use of all kinds of powerful media to convey our messages, including TV Ads, and we should showcase our people to the public.

    This war will be also fought in the Court of Law. We must have crystal clear case for each fight - the truths leading to our rights.

    This war begins with the children of Autism. And it can’t be won without parents. We can’t win it until we have won them. This war is not just against Autism Speaks. There are many others in their camp. They have a hold of the parent. Their offer to them is therapy, special schools, and special methods to cure and help their autistic child. They come to the families as the caretakers and researchers. We know that most of it is a lie, and their method is inhumane; we know that most of it does not work. It is becoming apparent now even to some parents. But they will continue because of a renewed promise of the breakthroughs and improvements by researchers and caretakers, and BECAUSE THERE IS NOT MUCH ELSE.

    This war we can’t win unless we offer a BETTER WAY - A way for their children to overcome; grow to stand tall, on their own, capable of survival. A Better Way, that truly works, as is evidenced by you - a Better Way that parents can come to and embrace.

    We must organize better - in our own way; we must find a better way for it as well. We should look for allies among the oppressed, helping them in their battles. We should look for allies among parents. We should look for allies among Just. And we should not rest.

    This war is about Our Fate - from the first moment of life to the last. What do I want for me; what do we want for us; what do we want for the future - what will it be. Remember what you’re fighting for and why.

    Yours,
    Vorya Yarow

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  32. Vorya,

    It is indeed true that parents of autistic children, autistic self-advocates, and other supporters within and outside of the disability community must be allies and not adversaries. You are correct that because most parents of autistic children feel that there isn't a viable alternative, several resort to treatments that are harmful to their children either physically, psychologically, or otherwise, and this is not acceptable. When my parents died, my sister and I were adopted. My parents never made my sister and I feel like we were deficient in any way than the rest of he family, and we were never treated like we were less valuable than their biological HIV- children. In fact, my mother became extremely active in HIV advocacy and still is, and I became an advocate as a youth partially because I was inspired by her quest to ensure a good life for me and those like me. My mother intentionally framed my life and my health in a positive way, although unlike autism it is true that many people who are HIV+ are in favor or a cure because even though we can and do live full lives, HIV does have the ability to result in illness and increased likelihood of death. When my younger siblings were diagnosed with autism, my mother felt bombarded with metaphors about diagnosis being likened to death, etc. She found little kinship between herself and parents who were espousing vaccine controversy and promoting HBOT, chelation, and RPM. She was criticized for refusing to enroll my siblings in 40 hour per week therapies as "early intervention," choosing instead to seek programs that were shorter to allow them to have time to just be kids, and that were play-based and offered therapeutic practices that built on strengths. She is actually the reason that I have been researching Autistic blogs, so that I can learn more. This is a human rights issue, and autistic children are not guinea pigs. I agree with you that many hands are needed on deck--parent, Autistics, and I would add some open-minded professionals and researchers who can raise issues among their colleagues--for things to change.

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  33. Thank you very much for revising this post. It is greatly appreciated.

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