01 July 2012

Georgetown: Say No to Autism Speaks

Last week at the APSE conference, I ran into a Georgetown student volunteering at the Autism $peaks table who mentioned that they were thinking about starting an Autism Speaks chapter at Georgetown. As I told her in full hearing of the Autism Speaks staff person standing nearby, I will FIGHT from the administration all the way down to every member of the student body to make sure that NEVER happens--not at my university, not for as long as I am alive and in attendance.

I will use every poster, every Facebook status, every student group meeting, every list serv, every contact in the administration, every contact in student leadership, every member of the Autistic and allied and disabled communities, every weapon I have down to my own eye-teeth to END this idea before it EVER gains even the smallest bit of traction. Autism Speaks is an organization that does NOT represent Autistic people. They don't even include us in their leadership. Furthermore, their goal is to eradicate Autistic people. If you believe in equal rights for all people, including people with disabilities, you cannot in good conscience support Autism Speaks.

Fellow Georgetown students: Do not stand for speech that promotes ignorance, fear, pity, intolerance, and ableism. Autism Speaks would have you believe that its only opponents are "misguided high-functioning people." That is not true.

Autism Speaks is the organization behind the "Autism Every Day" public service announcement in which their former vice president stated that she considered driving off of a bridge with her Autistic daughter, and only refrained from doing so because she would also have had a non-Autistic child waiting at home; she made this statement on camera with her Autistic daughter in earshot in the room on screen. Autism Speaks is the organization behind the "I Am Autism" public service announcement in which an insidious voiceover claiming to be "autism" detailed all of the tragedy and horror and bad consequences of autism.

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. Curing me of autism conjures the same mentality as the idea of curing me of femininity; it's so fundamentally perverted and disturbing that words fail to describe how appalling and horrific the idea of severing an essential part of our humanity is to us. No, being Autistic is not sunshine and rainbows. But it is as much a part of who we are as our other attributes.

Among the Autistics who oppose Autism Speaks's anti-Autistic agenda are people who experience significant disability, people who have been institutionalized, people who have been educated in segregated "special needs" classrooms, people who have their own Autistic children, people who do not speak, people with multiple disabilities, and people who have faced extreme discrimination and prejudice against the disabled. Yet we are precisely the people whom Autism Speaks fallaciously claims to represent, and there is a large and growing number of us, Autistic people, who are vocal and adamant about our contempt for Autism Speaks.

Any organization that purports to "help" Autistic people, particularly at a university such as Georgetown that holds so highly the ideals of social justice, equity for all, and men and women for others, must be an organization that meaningfully includes Autistic people at all levels of leadership, including among the Board, officers, staff, and general membership; stands for practices, policies, and systems changes that will lead to equal access and opportunity across all spheres of life and the community for all Autistic people; promote positive and accurate information about autism, Autistic people, the Autistic experience, and Autistic culture; lend the most import to Autistic voices, whether literal or metaphorical, when determining perspectives, priorities, philosophies, and partnerships with other organizations or agencies; and support acceptance, understanding, and equal rights for Autistic people as Autistic people.

Autism Speaks fails all of these tests.

We cannot be a university that purports to support equal justice and equal rights for all if we allow the hate-mongering and fear-mongering that Autism Speaks represents to fester on our campus.

In the name of helping us, they hurt us. In the name of fostering "awareness," they propagate fear-mongering statistics and illogical analogies. In the name of serving individuals and families, they ignore the voices of Autistic people. In the name of appointing an Autistic person to one of their advisory boards, they perpetuate the tokenism of a marginalized population. In the name of science, they are complicit in perpetuating the dangerous and unfounded myth that vaccines cause autism. In the name of benefiting future generations, they threaten to commit pre-emptive genocide against all future generations of Autistic people. In the name of serving individuals with the most significant disabilities, they silence and de-legitimize the voices of all Autistic people, including those with the most significant disabilities. In the name of supporting Autistic people, their chapter leaders shout profanities in the faces of Autistic people who organize protests at their "Walk for Autism" events.

Autism Speaks does little, if anything, to benefit Autistic people, and what little they might conceivable do that benefits us is far outweighed by the gravity of their repeated failures and egregious violations of the principles that undergird the majority of progressive disability rights organizations, whether primarily social, advocate, or activist. The principles of the disability rights movement are to seek equal access and opportunity, not pity or charity, and respect for disabled people and people with disabilities to live as we are, and not in the perpetuity of hoping to become nondisabled because of societal projections and expectations; to seek full inclusion and integration of people with disabilities and disabled people across all facets of life and the community, rather than relegating us to nursing homes, institutions, segregated classrooms, and sheltered workshops; and to demand equal rights over ableist policies and practices in service provision, employment, education, healthcare, technology, transportation, and housing. Organizations that are in alignment with the principles of the disability rights movement are led, directed, and driven by people with disabilities rather than hand-holding or parading the few tokens included in any public role while nondisabled people rule the court.

To those students at Georgetown who wish to support organizations that benefit Autistic people and fight for rights and acceptance, not a cure and demagogic rhetoric that harms us, consider supporting organizations like the Autism National Committee, the Autism Network International, the Autistic Self Advocacy Network, the Autism Women's Network, or even the Autism Society. For cross-disability organizations that support the disability rights movement rather than the medical and charity model of Autism Speaks, consider supporting or joining organizations like TASH, the American Association of People with Disabilities, APSE, the National Council on Independent Living, the National Youth Leadership Network, the HSC Foundation, ADAPT, Self Advocates Becoming Empowered, or the Maryland Coalition for Inclusive Education.

If your interests are academic or you wish to integrate research and practice directly, consider supporting or joining research efforts through the Academic Autistic Spectrum Partnership in Research and Education, the Institute on Disability at the University of New Hampshire, the Disability Cultural Center at Syracuse University, the Institute on Communication and Inclusion at Syracuse University, the Burton Blatt Institute at Syracuse University, the Center on Human Policy, Law, and Disability Studies at Syracuse University, the Institute for Community Inclusion at the University of Massachusetts Boston, the Society for Disability Studies, the Harvard Law School Project on Disability, the National Collaborative on Workforce and Disability for Youth, or even Georgetown's very own University Center for Excellence in Developmental Disabilities.

On a side note, perhaps you're wondering why there are four separate listings for entities furthering the principles of disability rights hosted at Syracuse University and exactly one for Georgetown. (For those reading who aren't in the know, Syracuse is Georgetown's major rival.) As a Hoya, I see that as a challenge to those of us at Georgetown to develop and maintain excellent programming and collaboratives supporting disability rights to rival those already in existence at Syracuse. After all, we can't allow ourselves to be outdone by them of all universities, can we? I've proposed it before, and I'm proposing it again--Georgetown needs to create, develop, and foster a Disability Cultural Center or a Center for Disability Culture in order to promote both internal and community outreach to both people with disabilities and those interested in becoming allies through both social and academic programming as well as supporting student-led organizations whose charters align with the philosophy of disability rights, in the same vein as the programming and outreach efforts of the LGBTQ Resource Center, Women's Center, Center for Multicultural Equity and Access, and the Office of Mission and Ministry. Without such infrastructure in place, it is far too easy for predatory groups like Autism Speaks to mislead students and plant their poisonous roots on our campus in the absence of a strong, administration-backed disability rights presence.

Our student body is diverse in many ways, but while we acknowledge race and ethnicity, nationality, sexual orientation and gender identity, political and religious beliefs, and socio-economic status as not merely valid social identifiers but those whose memberships are represented by a myriad of both student-led organizations and administrative offices on campus, we are sorely lacking in a unified, disability rights founded presence on this campus. Diversability is the student-run disability awareness club including both disabled and nondisabled students, while Best Buddies Georgetown partners presumably nondisabled students with members of the community with intellectual and developmental disabilities. The Academic Resource Center's primary functions in regard to students with disabilities are to facilitate and coordinate academic and housing accommodations, and to provide occasional programming around academic needs of students with disabilities. The Georgetown UCEDD and the Center on Child and Human Development (GUCCHD) are fairly severed from the main campus, the administration, and the student body, and primarily focus on serving children and youth beyond the gates.

A Disability Cultural Center, established as an administrative office on the same level as the LGBTQ Resource Center, Center for Social Justice, Women's Center, Center for Multicultural Equity and Access, and the Office for Mission and Ministry, would serve as the unifying starting point and foundation for all disability-related organizations and offices across the Georgetown community. A DCC would be able to allocate funding toward student groups like Diversability and Best Buddies Georgetown, as well as partner with the ARC or the GUCCHD/UCEDD, or any academic department or faculty member, in order to provide or promote social or academic programming around disability studies, disability culture, or disability rights. The increased public presence of a DCC would foster a greater sense of affinity for the civil rights model of disability among the student body, rather than allowing the University to become complicit in perpetuating the medical and charity exclusive models of disabilities, which is precisely the mindset that has allowed some students to entertain the idea that Autism Speaks is a good organization to have on campus when in fact it is the farthest from.

To my fellow Georgetown students, I implore you to say no to Autism Speaks and their brand of fear and pity propaganda about people like me. But do say yes to disability rights and to organizations that meaningfully and accurately represent disabled people.

__________
To read more on Autism Speaks, see my letter to the Holy Cross President at Responding to Autism Speaks.

104 comments:

  1. "Nothing about us, without us." As a person living with Bipolar, I am also tired of hearing my life described as a tragedy by people who never been bipolar, neverhad a bipolar mom and grandmom and never had the opportunity to know us to be great people, talented people and tremendous parents that we are. We cannot accept prejudgement anymore than any other group. People with Disabilities were the FIRST people brought into the concentrations by the Nazis. It is about time we were treated as a vibrant diverse community who has survived the unspeakable. We demand human rights and respect, including the right to speak for ourselves. Right on, Austistic Hoya.

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    1. Have to disagree with you here, Anonymous. I too am diagnosed with Bipolar Disorder, and am SO relieved that the medication I am on is finally doing its job. While I love myself, I would happily do away with debilitating depressions and hypomanic/manic episodes which make me less able of taking care of my wonderful children, including a child with Autism. I just did the Autism Speaks walk a week ago, with pride. Not because I'm ashamed of my son, but because anything that can HELP him experience less pain is important to me as a mom(and yes, he DOES experience intense pain when he can't regulate himself and begins hitting himself, screaming for two hours, and biting). Good to have discussion, I agree. But I for one celebrate the existence of Autism Speaks, and related organizations.

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    2. A lot of awful things have been done throughout history in the name of "alleviating pain." Have a gander at "The White Man's Burden." To "cure" Autism is to eliminate an identity, to say nothing of the consequences for our society more generally if the entire autistic way of thinking were made to disappear.

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    3. This comment has been removed by a blog administrator.

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    4. stillfinditsohard: Again, I will not tolerate the kind of rhetoric that suggests other commenters should be dead or killed. I don't care whether they're people with whom I agree or disagree; it's not acceptable. I am moderating your comment.

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    5. @stillfinditsohard:

      It is disgusting that you would wish the mother of a child with autism dead, because she volunteers to walk in a walk to raise money to help children with autism.

      Or wish that her children are taken away from her, as she works to gain proper treatment for an understood neurodiverse condition that presents itself as a co-morbid condition among many people on the spectrum, to take better care of her children.

      I don't believe in inherent human evil, but those two statements are as close to it that I have seen lately, in autistic online communities.

      This is the type of representation of the autistic community that brings shame to it, when people visit sites like this to try to understand the inner workings of the mind of individuals with autism. They are not going to leave with a very good impression of individuals with autism, if there are more like you that would express this kind of death-wish hatred toward their fellow human beings, for no evidenced rational reason.

      It inspires a type of awareness, in the general population of fear of individuals with autism, as individuals with no empathy for their fellow human beings.

      It is more disgusting than anything ever presented in an autism speaks PSA, as the most evidenced offensive incident portrayed was an irrational thought overcome by constructive action.

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    6. @Lydia, thank you for moderating that comment, there is no need for my response now, you are welcome to delete it if you like.

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    7. I received this comment today but accidentally clicked the delete button. Here it is:

      Anonymous has left a new comment on your post "Georgetown: Say No to Autism Speaks":

      @Alicia, I, too, am bipolar, and I have to agree with the other anonymous. I could not be happier that lithium (well, don't bless its side effects) stabilizes my mood, but I still have a fundamentally different experience through using that medication than someone who is not bipolar. For starters, I have to remember to take it. More seriously, I am still learning to sort through which moods are moods and which moods are Moods, even after 4 years stability. It's frightening to have to navigate "is this happiness a real happiness or just a high my brain chemistry being off, does my dosage need to change, etc.". I will probably never "learn" that and be normal - staying stable is and will be a lifelong thing to navigate - and quite frankly, I don't want to be normal, I want to be stable.

      I don't claim to mean what the original Anonymous in this thread meant, but even if I seem/act/whatever "normal", I am bipolar and I want my being bipolar to be okay. Right now, it's not. Right now, it's "pretend to be completely normal" to be accepted, and even if I can do that successfully, that approach erases a fundamental part of who I am and my daily experience. That's not okay.

      Posted by Anonymous to Autistic Hoya at April 2, 2014 at 11:04 PM

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    8. Lydia, that is exactly what I was thinking. The OP was simply saying he or she doesn't want to be seen as "separate" and all the negative things that implies. It is in no way anti-medication. I, too, am Bipolar. But I've been properly medicated for about 4 years now and I'm doing well. I'm a new mom and my marriage is incredible. I speak out when people use "bipolar" in the connotation of describing the weather or a person who can't make up their mind.

      I have a wonderful friend whose older brother is mid-spectrum Autistic. She opened my eyes to the issue, which I didn't know existed before her. I see her brother, and all Autistic people, as people. Not diseased, not "less than", but as people with disabilities. And if we could find a way to help alleviate some symptoms which are affecting their ability to enjoy their lives, I am 100% behind that, as I can relate.

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  2. “I will FIGHT” – Good!
    “If you believe in equal rights for all people, including people with disabilities, you cannot in good conscience support Autism Speaks.” - This is a TIMELY fight. Bring it to them!
    Start a MOTION for a Vote of No Confidence in Autism Speaks! On your site or better yet @ ASAN. Let us Vote Them Down and let it be known to all.
    A Vote of No Confidence by Autistic People will have weight...

    Vorya Yarow,
    At your service

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  3. Thank you for writing such a clear, logical letter about your reasons for opposing Autism Speaks. My daughter experiences an IDD that is not autism, so I am not familiar with this organization-but I am fighting for a world that includes her in all decisions that affect her, and I do appreciate the information that you've shared here, and I agree with your assessment.

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  4. I don't consider myself disabled, but we must ignore those details for the moment. Autism Speaks is like an ever expanding monster. We must end it NOW

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    1. I don't consider myself innately disabled, but I do consider myself disabled by the standards and norms of our culture--Disability is a Social Construct.

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    2. Beautifully and elequantly written! As a parent, I am in awe of my son with autism. He is 9 and smiles when he tells people he has autism. I asked him what he would tell people who've never heard of autism...he said, "Well, I hate to say it, I'm probably smarter than most people. I can hear things far away. Autism is like having super powers."

      I love that he thinks he has super powers...I know he does!

      Eva Geranton

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  5. Too bad all you see are the faults and none of the good this organization has done. People with autism spectrum disorders (I personally would prefer to call it conditions rather than disorders) have been excluded from healthcare insurance coverage for families wherein all other family members were covered. Autism Speaks has changed that in many states. Some people with severe autism (Kanner's infantile autism) are severely disabled and wi never

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    1. If the good is outweighed by the bad, what then?

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    2. And if a person who is considered low-functioning challenges all of your claims (hint: this has already happened), what then, normie?

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    3. Except most of what they do has little to do with that. Only 4% of their budget goes toward "family services."

      It's also considered financially irresponsible based on their spending. http://smallswingshoes.tumblr.com/post/66981246454#notes

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    4. Except the problem is that only 4% of their budget goes towards "family services" in the first place.

      They're also considered to be financially irresponsible. http://smallswingshoes.tumblr.com/post/66981246454#notes

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  6. Will never live an independent life. Meanwhile many will live an independent life, get well educated, marry and live independent life. Autism is not a monolithic thing but a spectrum of neurological differences which vary from no disability to profound incapacitating disability. Like my friend with Aspergers, you seem to have forgotten the less fortunate in your views. Father of a son with mild autism.

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    1. Like Amy Sequenzia? Or Amanda Balmer? Both don't speak, both need pretty significant support, and both still dislike Autism Speaks. It's not just the ``high functioning" who don't like Autism Speaks, no matter what they might try to tell you. (I am in college and engaged, so I pretty much am what you're talking about as more fortunate, but I can point you to people who aren't like that and still hate AS.)

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    2. Autism is not a monolithic thing, but you basically said it only has two faces. Stop with your black and white thinking. ASAN was founded by guys who were called lower-functioning than I. Quit making the same tired, false arguments.

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    3. Yawn. This "high/low-functioning" horse is already dead. Quit beating it.

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    4. Kanner does not mean lower functioning. Kanner's patients would almost all be considered high functioning by today's criteria. Not that I think functioning levels express the diversity of autism but still.

      Also I receive fairly extensive support and have sometimes been referred to as severe or low functioning myself. I don't support Autism Speaks.

      Anyone classified as severely disabled is at high risk for abuse, neglect, and exploitation. This means that treating us with respect becomes more imperative. Not less. So if an act of disrespect is bad for someone with more power to fight back, it is worse for someone with less power. Autism Speaks promotional materials repeatedly disrespect children with limited ability to fight back. This sets both them and others up for a higher rate of abuse later in life. They are a terrible, merciless organization, and should never be treated as if they're good for those of us who can't live independently.

      In one Autism Speaks publication a mother said she cannot see her daughter as differently abled because she can't see her as abled at all. I don't like cutesy euphemisms but that quote was a terrible thing to say. Even a short video clip showed her beautiful daughter expressing love, empathy, and compassion both verbally and nonverbally. Other promotional materials are no better, downplaying children's abilities if at all possible. This is not respect and it will not end well for some of these kids, I can watch and see how their boundaries are crossed in pointless power struggles (not even doing it for essential things) that will leave them at risk for abuse later.

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    5. It is difficult to analyze an organization by responses of individuals on internet blogs, where there is allowance for differences of opinions. But if the child was evidenced smiling happily, lovingly showing empathy and compassion, it is only evidence that the child has been provided the same since birth, regardless if the mother's personal opinion doesn't meet politically correct disability movement expectations.

      Autism speaks current PSA's, including their website actually promote a reasonably happy image of autism, per the individuals portrayed, even for those more seriously impacted by disabling aspects of the condition, reflective of what you describe in that short video clip.

      The images of those videos that showed a more negative reality of regressive autism, that some found offensive are history from years in the past, continuing to be propagated and viewed in autistic online communities long after Autism Speaks filed them in the past.

      The best advantage a child on the spectrum has are parents that love those children. One doesn't determine the family they are born into, nor do they determine the children they will have. It is always a process of adaptation that result in better consequences for some than others.

      You are giving Autism too much credit for the reality of bad things that happen in life. They are raising money through fundraising efforts now focused on statistics and verbiage of concern rather than a negative portrayal of an actual child appearing to lack comfort in life.

      You are correct in your statement about Kanner's, but Kanner did not identify regressive autism. This is the issue that Autism Speaks was founded on. It is an issue associated with abnormal brain growth specific to males with this condition, a subgroup of autism unlike any other form of autism, per this research that has been done specific to that abnormal brain growth.

      There would be no vaccine controversy without this form of autism, but the abnormal brain growth finding, puts an end to vaccines as a defining causal factor of regressive autism, that still floats fairly strong in Europe among those whom feel there was a government conspiracy, per Wakefield's research.

      This is the type of research that autism speaks funds that dispels dangerous myths and leads to the truth.

      If you can provide a link to an actual current negative image of an unhappy child portrayed by Autism Speaks or disrespectful action toward a child, I would challenge you to do so. If anything they have moved in the other direction, and provide sugar coated pictures of happy children throughout their website, as well in public service announcements, with statistics that now commonly compare autism with the odds of being a professional golf player or football player.

      The organization is making every effort to satisfy all whom are concerned with a negative portrayal of autism, but unfortunately there is an imaginary negative portrayal still propagated in online autistic communities that no longer exists in the reality of autism speaks public service announcements with portrayals of individuals with autism. You can visit the website and see children portrayed as happy as anyone would see anywhere in society.

      There has to be some serious message of concern; it is a disorder and there are evidenced government statistics associated with it. And while vaccines have been refuted as a definitive causal factor in regressive autism, that abnormal brain growth isn't going away with a pill or behavioral intervention. The only potential is prevention which unfortunately appears to be highly unlikely unless some environmental factor can be found much earlier in development.

      Research is the only avenue that can potentially move science in that direction.

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    6. I was responding specifically to a person's usage of the term Kanner autistic, which was incorrect. I'm quite curious to know when so-called regressive autism became about boys only. Given that I know many girls who have it, and technically have it myself. This is the first I've heard that it is a male condition. I do know that language regression tends to happen after a specific number of words are learned. In autistic children who also have a condition, like Down syndrome, that delays speech, they learn words at a slower rate so they lose words later. And from experience, and the experiences of both adults and kids I've known who experienced a loss of language in infancy or early childhood, many of us do get language back later on. Not everyone is going to be writing posts like this, but still a lot of us do regain language. I have my own theories as to what's actually going on in our development in some cases. But I'm no scientist. However I work with a lot of scientists, and they take my guesses seriously enough.

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    7. The recent research showed abnormal brain growth specific to males with the condition. The abnormal brain growth was not seen in females diagnosed with regressive autism, which is much rarer than the condition seen in males.

      Just to ensure clarity these children are not diagnosed with a condition like Down syndrome.

      The fact that this abnormal brain growth is specific to males diagnosed with regressive autism only, suggests that this is a specific subgroup of autism significantly different from all others.

      When one says us, in regard to regaining language, it is a rather subjective use of us, in that the potential associated factors of what is defined as autism spectrum disorders by the DSM can be significantly different from one individual to the next.

      Per the example of these males with abnormal brain growth with regressive autism, females diagnosed with regressive autism, males diagnosed with regressive autism without abnormal brain growth, Down's Syndrome, Pragmatic language impairment symptoms, 22Q11 deletion syndromes, non-verbal learning disorder symptoms, fragile x syndrome, recent studies showing male specific brain characteristics in females with Aspergers syndrome linked below, the list goes on and on, and continues to expand. The phrase you've seen one person with autism, you've seen one person with autism, is become more evident as time goes on. Us is evidently more relevant to I than we.


      The only close to objective us that exists is the autism spectrum disorder(s), the DSM working groups provide in a diagnostic manual describing common criteria for described impairments of human behavior. These behavioral impairment characteristics can be related to an almost unlimited number of cultural environmental factors, as well, per that "autistic like behavior", that varies from culture to culture, ranging from the social isolation of children to video game addiction.

      But I take things literally, by Us you may referring to people with similar behavioral traits, not underlying factors associated with those traits, which mirrors the DSM description of what the APA defines as autism spectrum disorders.

      http://www.ucdmc.ucdavis.edu/publish/news/injuryprevention/5983

      http://sfari.org/news-and-opinion/in-brief/2012/cognition-and-behavior-asperger-brains-similar-across-sexes

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    8. By us I am referring to autistic people who started out with some speech and then lost that ability in infancy or early childhood. Some later regaining speech, others not. That's the only definition I've ever heard of regressive autism.

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    9. Thanks for the clarification, I read another one of you posts, and it is evident that you don't buy the package that human beings neatly follow psychiatric labels, or criteria definitions.

      Part of the reason I support research in general, is that it makes it clear that the underlying mechanisms associated with the behavioral impairments described and defined as the human construct, Autism Spectrum disorders, are diverse in biological and environmental nature, even in the case of regressive autism where males are apparently affected differently than females, per the abnormal brain growth, and females with aspergers, per brain scans that appear to lend some credence toward the extreme male brain theory while males with Aspergers don't.

      That doesn't surprise me at all, per anecdotal experience; it will be interesting to see if the study is replicated in larger groups of individuals diagnosed with Aspergers, as well as across other parts of the diagnostic spectrum, that do not speak, diagnosed with autism disorder.

      There was another study out recently that evidenced higher levels of behavioral impairments associated with autism in female to male trans-men. While they were not evident in male to female trans-women.

      The language issue is interesting to me, with a verbal delay, I felt like I would eventually learn how to speak like others, with a voice of my own, because I was told I was smart in school, per grades, but I didn't get comfortable with talking, until much later in life, and only for a relatively short period of time.

      I don't think one can underestimate the power of language in navigating the world, not only in the external world but the internal world as well. A keyboard and a screen helps to accommodate the issue.

      If you don't mind sharing I would be interested in your view of what causes the language problems. I think it is potentially related to hormones, brain development, hemispheric balance, and communication between the hemispheres. As well as the environment one is exposed to for potential adaptation, through the process of neuroplasticity. I ended up in the uncomfortable position of working with the general public most of my life, but that social education and necessity to adapt, was more valuable than the three degrees I earned in college, as far as actual survival. I was lucky oral presentations were not required in my areas of study in college:)

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    10. Anonymous: you stated that regressive Autism...

      "...is the issue that Autism Speaks was founded on. It is an issue associated with abnormal brain growth specific to males with this condition, a subgroup of autism unlike any other form of autism"

      And therein lies the problem - not that they provide assistance and spread awareness about this type of Autism; it's that they define this as simply what Autism IS. Thus, the public perception is that Autism is defined by deficits, mentally ill behavior, some form of mental retardation, as someone who isn't "there" mentally.

      Any positive aspects simply means your autism isn't that "bad", or it means it's the "non-autistic" part of you, or it means that you've summoned up that non-autistic part of you to overcome the debilitation that is Autism (which is what it is at it's core, based on Autism Speaks material).

      I'm all for helping those severe cases, and if the organization is built on assisting and raising awareness for regressive severe autism, I'm all for that. But the organization is called "Autism Speaks", not "Regressive Severe Autism Speaks".
      So, whatever good they may do in assisting severe cases, the cultural implications are much much larger.

      And while they may have begun to portray Autistics in a more sympathetic light, as smiling children, the large scale concept of what Autism IS, is the bigger issue. Autism is not defined by being a child, a perpetual child, or unable to think or understand or function in the world around you (though this does apply to certain mentally handicapped special needs persons).

      So, while yes, they've been changing directions, and yes, there are people they do help, pity and condescension flows down from the public perception of Autism into the larger culture and the larger Autistic population - even if the Autistic kids they are showing now are happy and a message of hope or love is expressed toward them, most Autistics are not children, do not have the minds of children, and want to be treated as people on an equal level.

      So really, what we need is an organization that assists Autistic people who are "special needs" specifically, not an organization that claims that it speaks for the Autism itself.
      And for the record, whatever they do to change, I DO believe their earlier material and words are still relevant: they reveal the ideological misconceptions on which they are founded, and the same people are generally still running it. That they'd put out such negative material at ALL in the first place is pretty much enough for me - people supporting them now were generally supporting them then, and the leadership is pretty much the same people.

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    11. One more thing: by basing the measuring stick of what Autism is on the most severe edges of the spectrum, people all over the spectrum end up internalizing the idea; I've heard Asperger's folks refer to having a "disease". After all, the increase of diagnosis is being referred to as an "epidemic". People all across the spectrum begin to believe that they are defined by what is wrong with them, not by what is right.

      Even if Autism Speaks has more positive portrayals of Autistic children, showing them smiling and happy, they are still defining Autism ITSELF as being something that is wrong - sure, accept and love your autistic child, but take his/her handicaps and paint these as what defines Autism itself, and everybody on the spectrum internalizes shame and inability. I know I did.

      Finally: if Autism Speaks really were changing direction, I don't care if they've toned down the rhetoric or gotten more balanced: if they really are the voice for Autism, where are they when Autistic children are murdered by their parents?

      I know Allison Singer is gone now, and I'm not saying the group as a whole is actually OK with murder or anything - but all across the news, whenever an Autistic child is killed, the reporting and public statements are never "what a tragedy that someone would kill their child". It is always, "what a tragedy that Autism is so stressful that it would drive a parent to such extremes that they'd kill their own child".

      I've never heard Autism Speaks make public statements about such cases, but the fact that "Autism Everyday" explicitly spoke of a parent considering murdering their child as being reason to feel sympathy for the PARENT...

      Well, whatever changes they've made away from that sort of rubbish, well, prove it. No, not by just not saying anything like that any more and showing smiling children, I want them to come out and publicly condemn cases where parents kill their autistic children.

      This would prove that they really have true sympathy for the Autistic children, and if they are truly sympathetic, maybe they have some validity to be their advocates. But their sympathy and advocacy is primarily for parents of autistic children - which is well and good, unless it comes at the EXPENSE of advocating for the child.

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  7. I think the part where she wrote about autistics who were institutionalized or who didn't speak pretty much covered the "less fortunate" part of this issue. I'm sorry you feel threatened by criticism of Autism Speaks, but at least try to read what the other person is saying before you shoot it down.

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    1. btw: person with mild autism.

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  8. Great article. I especially like the concrete list of other organizations. I just may have to join some more.

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  9. Great post, Lydia. Succinctness, however, has never been one of your charms. To me, the length of this post diluted its message/impact. I see it as two posts:
    (1) Why Georgetown should not have an Autism Speaks chapter, and
    (2) Given (1) what can Georgetown do to support the disability community?

    That said, the content is excellent, especially the many links to resources.

    I'm amused by some of the comments. Yes, Autism Speaks has managed to do some good things, such as the insurance bit. Still, the efforts there and to provide services are but a miniscule part of their budget, and do not absolve them of the great harm they have done to the public understanding of autism.

    Lydia, you are being scolded for views you don't hold. The pity model is invoked. We are told there is an autism "spectrum" and that one can have "mild" or "severe" autism -- all of that is hokum. I am glad you are there to help move us out of and beyond this kind of pre-scientific thinking.

    http://www.mfw.us/blog/2012/06/28/recent-autism-research-a-synopsis/

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  10. It's nice of the neurodiversity community to speak for all autistic people and their families. Opposition to Autism Speaks and other organisations that are doing vital research that may alleviate the suffering of a lot of people keeps science from progressing. This medieval stifling of medical research isn't unlike the religious right working hard to prevent research in global warming and reproductive technology. All it does is make people suffer longer in the name of principle. Just because it is just a difference to you doesn't mean it is for everyone. And yes, families, who are often the 24 hour caretakers of people with autism should have a voice even though the neurodiversity movement does their best to make families the villains and pretend like having to take care of someone who is a permanent toddler in an adult body doesn't cause any stress at all.

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    1. This is not about certain A.S.D. folks claiming to speak for others - it's about A.S.D. folks rejecting those that do exactly that. Yes of course parents and caretakers of autistic people should have a voice - and they do. No one is saying they shouldn't. No one is saying it's not stressful. No one is vilifying parents for taking care of their children; we are rejecting the overall ideology that a lot of parents end up supporting because they don't know what else to do, and do not understand how the ideology affects autistic people in the long term, big picture.

      It's ironic: an organization claims to speak for autistic people, and then when autistic people in droves come out and declare that they do not, Autism Speaks and it's supporters accuse the autistic people of trying to speak for everyone and for stifling people's opinions.

      Projection? I think so.

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    2. "24 hour caretakers of people with autism".

      24 HOURS of autistic child - 8 hours of sleep, 8 in a facility for eradication of his or her autistic self, and the remaining 8 with you, the caretaker of a permanent toddler.

      A parent I presume of a child? No. You chose another title - A CARETAKER OF PEOPLE WITH AUTISM. It’s stressful to you, the caretaker!

      Do you think your child is not aware of who you are?

      Vorya Yarow,
      I had real parents.

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    3. I used the word caretaker because not all caretakers of autistic people are parents. And yes it is stressful, a study showed that moms of ASD children have stress levels of post-combat soldiers. Raising or living with someone with ASD is not easy, especially when the disability is severe. So yes, I dare to acknowledge reality, sorry it isn't PC enough for you.

      Autism Speaks doesn't exist to speak for autistic people. Its mission is to do research not advocacy and to raise funds for research. The ND's insistence that autism isn't a disability and working to prevent research is, if effective, going to slow down the rate of progress and a lot of people will continue to suffer. But I guess being principled is more important than families continuing to suffer.

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    4. A comparison is well made – Post-Combat Stress. It is because both are combat; yours against your child.

      Look at it with their eyes, listen with their hearts, try to make sense of it – why these people, my parents, my father, and mother, and others in the family are waging war on me?

      Wake up parent, you’ve been brainwashed. For a long time now – it’s a powerful entity that stands between you and the understanding of what is right and what is wrong, of what works and what doesn’t, of what is injustice and cruelty and what is help. It is our complicit society none the less that is doing it to you, and me, and your child, for its own benefit, working around and against our laws.

      And the laws are simple and just, and they are on our side, and it is time we are beginning to use it.

      Wake up parent, and look at it again, without a blindfold.

      Vorya Yarow,
      At your service

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    5. It's called AUTISM SPEAKS. AKA it is claiming to speak for autistic people in its name. So... yeah. If they have the mission you say they have, I think they need to change their name.

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    6. No, the study compared stress levels in different groups and found that mothers of ASD children had stress levels at the same level as post-combat soldiers. It had nothing to do with "waging war on children" it just confirmed what everyone already knows, that having a severely disabled child is very stressful. I am not brainwashed and not promoting anything against any law, I am saying that autism isn't all peaches and cream, it is a disability and in many it is very severe. No one disputes that having a young child who throws tantrums, wears diapers and doesn't sleep through the night is stressful on parents. For many with autistic children, that is a reality that will be with them for the rest of the child's life. So yes, there are many that support research that will reduce their suffering and the suffering of their child and they are not villains for doing so.

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    7. I'm the author of the post. Where and when did I ever claim that autism is not a disability? Even in this specific post, I described Autistic people repeatedly as disabled.

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    8. On what planet does suggesting alternative fields of research--as Lydia has done quite often on this blog--amount to "medieval stifling of medical research?" If I had opposed Eugenics in the 1920s, would that have made me an enemy of science?

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    9. In addition, you repeatedly refer to autistic people as having the minds of toddlers, saying "No one disputes that having a young child who throws tantrums, wears diapers and doesn't sleep through the night is stressful on parents. For many with autistic children, that is a reality that will be with them for the rest of the child's life." and "the neurodiversity movement does their best to make families the villains and pretend like having to take care of someone who is a permanent toddler in an adult body doesn't cause any stress at all." While some autistic ARE incapable of doing things that society expects most adults to be able to do, that doesn't make them "toddlers" and that sends the message that EVERY autistic person is like an immature and fussy infant even if some of us are highly functioning adults that are just as mature and maybe more intelligent than you. While I do agree that there are severe cases that would benefit from scientific research, and an organization designed to speak for and help those cases would be good, my problem is that Autism Speaks takes the severe cases and "teaches" the public that ALL autistic people are like that, and that autism is some terrible epidemic that turns normal members of society into giant infants. Plus, can we take a moment to appreciate the irony of what you said here:
      "Autism Speaks doesn't exist to speak for autistic people. Its mission is to do research not advocacy and to raise funds for research."
      I rest my case.

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  11. I am with you 100%!! I can't tell you how much I love the power and energy coming from this post! I feel so proud to know you and how you fight for the principles you stand for and believe in. The way you push for social justice to make the world a better place not just for you, but for all the other people out there, and all the generations still to come. I will move to the DC area mid-August, so if ever there's a rally or somewhere I can add my "numbers" to, count me in!!

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    1. Thank you. We are all in it together.

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  12. And thank you Lydia. For who you are and for what you aspire to.

    Vorya Yarow,
    At your service

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  13. As a "severe, low-functioning", very disabled, needing 24-hour care and help with everything, I say that Autism Speaks is not advocating for me, but against me.
    I don't suffer, even though i realize my life has obstacles that most people do not endure. But I can't say that being autistic is harder because I've never been non-autistic. And I am ok with my autistic self.
    Autism Speaks could support research for better understanding of autism and how to provide better services for all autistics.
    They are only advocating for parents who do not accept and value their children, parents believe they lost their real child and don't really think their children have lives worth living

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    1. So, I totally just mentioned you on this comment thread in response to someone. Glad to see you have actually weighed in yourself.

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  14. Criticisms against AS, like Lydia's, are invaluable and necessary. AS is a powerful member of the autism community. We need conflict to check their power and realign goals of the community, as values and priorities change. Other members of the autism community are not required to and should not validate all of AS's positions no matter what. AS may be particularly adept at raising money, for instance, but they aren't the sole arbiters of values or priorities. Even if you are a supporter of AS, you should be able to recognize the importance of adding autistic voices, viewpoints, and values to the organization that gets the most attention.

    As community members, we should be able to hold these thoughts in our heads: that an organization can start with good intentions and make poor choices; that an organization can have lots of power and also abuse that power; that an organization can be meant for the benefit of certain people and also use strategies and messages that demean those very people; that your family receives some benefit from the organization and other people are hurt by it.

    And when that is true, that it is hurting people, we should be open enough to agree that the organization is due criticism and should change in response.

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  15. Congratulations people. You are advocating against those who actually suffer from autism disorders. The vast majority of low functioning persons with classic autistic disorder in fact suffer from intellectual disabilities and would not be able to communicate on this blog or the internet.

    Maybe you should take a vacation from university and visit the truly low functioning autistics living in psychiatric institutions or who injure themselves. My son is one of them and I will fight for him and for cures and treatments. I will support Autism Speaks and other organizations that fight for and try to help those who suffer most from autism DISORDERS not those who self aggrandize on the internet. Enjoy your lives, many who suffer from autistic disorder will not and your silly self promotion does not help them a bit.

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    1. You love your child. I do not doubt that.

      Yet you’ve mentioned a psychiatric institution. May I ask if your boy is in one of them? Or are you looking to place him there to cure his autism? I ask this question not to spite you, but out of compassion.

      Ask yourself where he would rather be – with loving father who accepts him as he is - or in the institution? Ask yourself this question, and then answer it honestly as if you were him. And after you answer it, look at all the things that were done to your son to cure him.

      Look at them one by one, since the time he was a newly diagnosed child and till now. One by one examine each - would you do “it” to a normal boy, was it humane? We know already it did not cure him, and it did not change him.

      Ask yourself - would you let it be done again to him knowing it did not work? And then perhaps you will have a moment of enlightenment when you have understood what we are saying - It’s inhumane, it doesn’t work, it makes it worse!

      That is all we are saying! That it is a web of lies – and Autism Speaks is spinning that web; and you’re caught in it, together with your child. I do not blame you.

      You do it out of love for him! Because “he needs it”! That’s what I hear from parents. But once you embark on this road, it is hard to accept the facts and the truth that is coming out now through our voices and the voices of many researchers.

      There is many other “Autism Speaks” looking to bag parents, just as they did you, but they can’t force you. It is ultimately up to you to look at it all once again, and to see beyond the smoke and mirrors and choose a better way.

      That’s all we ask.

      Vorya Yarow,
      At your service

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    2. Please, advocate for your son, and any help he can get. I am genuinely heartbroken for those who are trapped in their bodies and minds and cannot communicate. We are not denying the need for these children or adults. We do not oppose Autism Speaks because we think Autism can be entirely relegated to the High Functioning Autism. We oppose it because it relegates the entirety of Autism to the mentally disabled Autistic people.

      We are saying that whatever help Autism Speaks gives people, it does damage to the full spectrum of what Autism is. I cannot imagine how hard it must be to raise a severely autistic son. I hope that I do not have to do so if I ever do have children. But if I ever do, I am sure I will love that child and want the best for him and help him in any way I can to have a better quality of life, including eliminating symptoms like self injurious behavior.

      I do not relegate Autism to those who can communicate or are intellectually capable. But Autism Speaks DOES relegate Autism to those who are not so. If they want to help the severely disabled, I am all for that.

      But this goes beyond your son - beyond any sons or daughters who are severely autistic. It goes to the larger concept of what Autism itself is. And what it is, encompasses much more than the LFAs. We are not ignoring that LFA is part of autism. We are saying that groups like Autism Speaks ignore the HFA element and thus do not understand what Autism actually is in its entirety.

      If you want help for your mentally disabled child, support groups that advocate for those who are mentally disabled, or those whose mission is specifically for mentally disabled autistic children.

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    3. So you want organizations to stop helping those most severely disabled and instead start treating autism as a quaint personality quirk? After all, everyone in history that did anything important was autistic (unless they did something bad, in which case they were acting against autistic people I assume). I am glad that AS isn't one of those organisations that treats autism as a great and wonderful thing and actually treats it as the disability that it is. It is nice of you to tell a parent who is dealing with a severely autistic son to just bug off because his son's autism doesn't fit the rosy picture of what you want it to be. The HFA element already gets plenty of attention from other organisations to the point where autism is routinely described as a geeky personality type in the media and every scientist gets labelled as autistic.

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    4. You can treat autism as a disability without treating everyone autistic as inherently incompetent and ignoring the opinions of autistics who can communicate, including severely disabled, non-speaking autistics who will never live independently. The severely disabled ones mostly dislike Autism Speaks too, last I knew.

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    5. The fact that Autism Reality uses the term "suffer" in reference to Autism shows how fundamentally flawed his understanding is. Black people never "suffered" from being black; they suffered from discrimination by a white society. Likewise, we don't "suffer" from being autistic; we suffer from the neurotypical world's failure to understand us.
      Also, in reference to the last "Anonymous" comment, I hardly see anyone here "treating autism as a quaint personality quirk." To people who embrace it, it becomes a central part of one's identity.

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    6. This comment has been removed by a blog administrator.

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    7. stillfinditsohard: I will not tolerate that kind of violent rhetoric in the comments section of this blog. I've moderated your comment.

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  16. @Autism Reality - did you even read the posts above yours? My daughter (autistic, nonspeaking) might be described using several the disparaging terms you use, but she is highly intelligent and communicates very well through adaptive devices and resources, even scoring above average for her blue-ribbon-elementary fifth-grade class in a recent end-of year state standardized test. She is not helped by the pity-party nor the cure-at-all-costs mentality fostered by Autism Speaks. Perhaps there will be middle ground to be found someday between Autistics and Autism Speaks, if the organization truly begins to value their perspective and priorities. For now I completely understand Lydia's perspective and have long been telling my friends who want to support Autistics never to contribute to Autism Speaks. There are so many other options for organizations that truly value and support Autistics.

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    1. I am so grateful for parents of autistic children who "get it". It proves that it really is possible for change to happen in the larger culture. Thank you thank you for encouraging your friends not to support Autism Speaks.

      It would be nice if AS really did change their perspective and priorities. Unfortunately they have the same leadership that, whatever concessions they've made, are the same people who started the organization with a misguided ideology and lack of understanding of what Autism is (in all it's forms). I feel that any compromises they make at this point are more of a reactionary backtracking.

      I predict that Autism Speaks has hit it's apex and is on its way to decline; primarily due to the increasing solidarity of the Autism community facilitated by technology and increased awareness of the broadness and subtleties of the spectrum. The line is being drawn and deepened. Those who continue to support Autism Speaks become more and more vehement only because they feel more and more threatened.

      With the evolution of the tech age, it's going to become increasingly harder to label Autism solely as a disease and tragedy. Since when were billionaires publicly ASSUMED autistic? Not really until this decade (Gates, Zuckerberg for example).

      Autism Speaks came about around the time Autism became part of the public consciousness. The publicity came about in part because of the communication possible in the age of tech communication, and the realization of Asperger's Syndrome. But because they did not understand the entirety of the issue they were dealing with, ended up focusing on the negative elements of Autism and defined Autism by them to the public.

      We are at the edge of a huge shift in technology, culture, and consciousness - and the Autistic neurotype is an integral element. The mentality of Autism Speaks is the rocky barrier we are in the process of crossing over. I think it's inevitable that we will cross it and Autism Speaks will be a relic of the past, but the sooner we make it so, the better.

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  17. Are you aware that the Autism Organization that you endorse, on the Autism Speaks fact sheet on the ASAN website, and here, the Autism Society of America (ASA), has the same rating of 2 out 4 stars from the Charity Navigator organization in Financials as well as the same overall high rating of 3 out 4 stars? Also, wondered if you were aware that Autism Speaks spends a larger portion of their funding on family services than the ASA organization, and a much larger amount, considering the total funding Autism Speaks receives?
    http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=8321

    There are currently no research grants supported by autism speaks directed toward research into a prenatal test for autism. There are several for profit research organizations around the world, moving toward this goal, however autism speaks is not among these organizations in the research they fund.

    The ASAN website fact sheet argues autism speaks has no autistic board of directors, and refers to John Elder Robison whom has contributed much input to that organization as a token Autistic.

    There are no reported individuals serving on the ASA board of directors that you and ASAN endorses on the website fact sheet, diagnosed with an autism spectrum disorder.

    Autism speaks has always been careful to use people first language in describing the disability/disorder of autism in children. ASAN suggests in the fact sheet on the ASAN website that autism speaks is attempting to portray autistics as individuals that must be eliminated from society, when the organization portrays the disability/disorder as an issue separate from the unique individual who has the disability/disorder.

    Since Autism Speaks origin, regressive autism has been determined by research as a disorder inclusive to children diagnosed with Autism whom have abnormal brain growth, not affecting the majority of other individuals diagnosed with autism spectrum disorders.

    There was no way and there still is no way to address the cause and potential prevention of this often incapacitating disorder other than research. These children have been portrayed by autism speaks, in the past, as they are in reality, severely incapacitated by a disorder of brain function that limits their ability to communicate with the external world.

    ASAN is the only organization suggesting that these children are less than human or burdens, in the fact sheet, on the website. They are human beings that have been impacted by a severely incapacitating disorder, as autism speaks has depicted them in the media, and regressive autism has now been associated with abnormal brain growth.

    Autism speaks has made some mistakes in marketing that have offended some and the organization has changed the course of their marketing plan to support that constructive criticism, within reasonable limits. The two videos you mentioned were constructively criticized and removed from their website years ago. They responded with a good faith effort but you continue to hold them responsible for that marketing misstep by not providing a full accounting of the organization's response to the criticism, and the appropriate action the organization took.

    The 1 in 88 prevalence for autism in 8 year old children in classes for the developmentally disabled is determined by the government CDC agency. The autism speaks organization as well as the ASA organization only quotes the CDC, per that information. There are no government statistics for those older than 18 years old with autism spectrum disorders, so it would not be correct to suggest that there are 1 in 88, 18 year old individuals that will be diagnosed with an autism spectrum disorder.

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    1. Just going to argue with one of your points here: you said that the two videos were taken down. True, but the organization has never apologized for them. If you hurt someone's feelings, it's not enough to just stop saying the words; you need to actually say "I'm sorry, I know what I did was wrong" and say kind words. When I see Autism Speaks apologizing for everything they've done, and using their money to help real families instead of "research" to find a "cure" then I'll support them. In the meantime, I've regarded them the same way as the Nazi party used to be, with the intent of erasing certain groups people under the guise of "trying to help society."

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  18. Please check the information you are presenting, It is not correct. The CDC government agency supported the research into the 1 in 88 statistic per diagnoses of children whom are 8 years old in classes for the developmentally disabled across the US. The CDC has not researched what the statistics are for 18 year old individuals, so it would be incorrect to assume what that statistic is for 18 year old individuals, since that information does not exist.

    Autism Speaks has removed the two videos you point out, on their website, several years ago, because of constructive criticism, and has publicly apologized for missteps as a young organization, in an interview with that organization easily found with a search on the wrong planet website per "autism speaks interview", found in several threads.

    And finally, Autism speaks is evidenced as meeting or exceeding all financial standards and participation by individuals in their organization with autism related disorders on their board of directors, as compared to the Autism Society of America ASA, that is endorsed both on this website, and on a fact sheet on the ASAN site ASA, associated with Autism Speaks.

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    1. I am not aware of AS ever having apologized, publicly or otherwise, for their videos. Please, provide a link if there is one. I've looked and haven't found one.

      I'd hardly call AS removing the videos due to the public backlash against them an issue of them thoughtfully taking them down due to "constructive criticism".

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    2. No problem, here it is.

      Constructive criticism usually leads to change, if it wasn't reasoned criticism, there would have been no reason for the organization to make a change. There have been some individuals that have suggested Autism speaks should transfer the money provided by their fundraising efforts supported by those in agreement with their mission over to ASAN, to serve the mission of that organization, however obviously that's not reasoned criticism, whereas a change in marketing perceived and indicated by some as offensive is reasonable constructive criticism, whether one wants to call that constructive criticism a public backlash, or whatever else may be the case. The videos were praised by others in the general public, but Autism Speaks chose to adapt their marketing to individuals outside of their target audience of financial supporters, per criticism that was received. Most successful organizations adapt their marketing strategies in this manner for good public relations.

      http://cdn.wrongplanet.net/postxf175264-0-0.html&sid=7023304607b0224032fb8268bc3ead0c

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    3. "Autism speaks is evidenced as meeting or exceeding all financial standards and participation by individuals in their organization with autism related disorders on their board of directors..."

      According to whom? If having one solitary token autistic person on the board of directors counts as "participation by individuals...with autism related disorders," I'm not sure I trust the criteria of whoever is doing this measurement.

      As for "financial standards," I'm again not sure whose standards these are or what their parameters are. In any case, though, maybe they don't cook the books. Congratulations to them. That's not the point of our criticism. Our main beef with AS's budget is the preponderant sum they spend on research that is ultimately aimed at "curing" autism, and the consequently tiny sum they spend on services to actually existing autistic people.

      Also, as a personal matter, I don't trust any charity that pays anyone six-figure salaries. Charities are not businesses. They are charities. If you go into charity work to get rich, you're in it for the wrong reason. And if a charity pays someone far more than they need to maintain a reasonable standard of living, that person is getting rich off the free money of donors, and I for one will not be duped into donating my hard-earned money to pay for someone else's Mercedes.

      Middle class Americans need to stop supporting the charity bourgeoisie. God knows we do enough to prop up the regular bourgeoisie.

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    4. @Chris:

      You didn't provide the full context of what I said.

      "Autism speaks is evidenced as meeting or exceeding all financial standards and participation by individuals in their organization with autism related disorders on their board of directors, as compared to the Autism Society of America ASA, that is endorsed both on this website, and on a fact sheet on the ASAN site ASA, associated with Autism Speaks."

      Those facts are referenced in the next post below that I provided. You can go to the ASAN website and see the fact sheet I was referring to that discredits autism speaks and endorses ASA that have the same evidenced financial ratings. You can go to the link provided in the next post to the Charity Navigator organization, and see the evidenced facts that the Autism Society of America and Autism Speaks has the same 2 out of 4 star rating for financials, 4 out 4 star ratings for accounting transparency and the same 3 out 4 star overall high rating that meets or exceeds all autism organizations that the Charity Navigator Organization rates. You can go to the Autism Speaks website and see where 8 of their board members have disclosed they are parents of children on the spectrum, and you can go to the ASA website and see where only 1 of those board members has a child on the spectrum. You will also see that neither Autism Speaks or the ASA board of directors has anyone disclosing a diagnosis of autism for themselves.

      John Elders Robison, who contributes significantly to Autism Speaks research direction on their scientific advisory board, is disparagingly described by the ASAN organization as a token autistic, rather than a valued member of the autistic community, who has stepped forward to volunteer his services to improve the autism speaks research direction.

      And you can also review autism speaks yearly financial summary as opposed to Autism Society of America and see where Autism Speaks spends a greater percentage of their approximately 50 million dollars in fundraising revenue over and above the percentage of any of the other endorsed organizations on the ASAN fact sheet on autism speaks, including the Autism Society of America, on direct support.

      The amount of money that Autism Speaks spends on direct support comes close to the entire fundraising effort of ASA, and greatly exceeds the other two organizations endorsed on that fact sheet.

      Beyond this autism speaks is funding no research into a cure in their current 2012 restrictive research goals, that include research dollars appropriated to all areas of the spectrum, evidenced on the autism speaks disclosure on their website.

      The Charity navigator organization also rates CEO salaries of charitable organizations on that same website linked below, and Autism Speaks CEO salary was under the median salary rate of CEO's in similar sized charitable organizations in the Northeast.

      Autism Speaks runs a world-wide organization that is extremely complex per it's different mission goals through research, awareness, and education efforts, that provide free information to families and individuals on the spectrum.

      The organization employs science research and marketing experts with the high levels of national credentials to direct the research they support and ensure that the mission is funded through marketing efforts.

      Americans in general donate billions of dollars to charities, annually, if you are minimizing the efforts that those charities bring to millions of individuals in need in the US, I suggest you look at the actual research provided by the Charity Navigator organization that dispels myths associated with Charities, that have been discredited through exaggerated urban myths on the internet.

      There are problems among all organizations, charities are not exempt from this, but they are highly scrutinized by both government and third party watchdog groups and if they miss any required standards it is publicized for the general public to see.

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    5. To Anonymous (from July 5th):

      If they don't want to actually change their stance or actually apologize, OF COURSE they are going to self describe their backtracking as a response to constructive criticism.

      Here are the words used:

      "...a change in marketing perceived and indicated by some as offensive is reasonable constructive criticism, whether one wants to call that constructive criticism a public backlash or whatever else may be the case..."

      "...Autism Speaks chose to adapt their marketing to individuals outside of their target audience of financial supporters, per criticism that was received. Most successful organizations adapt their marketing strategies in this manner for good public relations..."

      So if I can summarize what I'm getting from this:

      "Yes, some people people got upset, but we are specifically NOT acknowledging that our words or tactics were offensive - on the contrary, our reasons are due to marketing strategies. Sorry you got upset, but our videos were publicly praised by a ton of people".

      How the HELL is this an apology? It's exactly the OPPOSITE. It's a justification and rationalization - "um, you can call it reacting to public backlash or whatever the heck YOU want to call it, OR you can call it responding to constructive criticism (hint: we will go ahead and explicitally state that we did it for marketing, so no, backlash is all in your head)"

      Instead of apologizing, at MINIMUM saying, we're really sorry it came across that way to people, we made an accidental communication blunder, they said "Well duh, good organizations change strategies for PR and marketing purposes". They used the opportunity to subtly compliment themselves for their competence like any good politician.

      Their justification of their past messages and rationalizing changing them as being based on strategy, means they've pretty much stated that they have the exact same ideology but their primary concern is the organization itself, and its funds.

      Delete
    6. Brian, you asked for a link to an apology and I provided that link. The paragraph was my description of autism speaks reaction to the constructive criticism as what you termed as a public backlash.

      Those comments are my comments addressed at general marketing principles, of what companies do when they receive constructive criticism. The apology from autism speaks was for the miss-steps they made as a young organization, that some took offense to. That apology is the link I provided; the apology is offered in an interview provided by an officer of the actual organization.

      Third parties sources reviewed the videos and commented that they were well received among autism speaks target audience. Target audience is a marketing term that I am using it's not a term autism speaks has publicly used to describe their efforts. But, as I stated there are marketing principles that successful organizations use to ensure success. They are evidenced to work so they are used by most every successful organization.

      The founder of the organization was the president of NBC and developed networks like CNBC and MSNBC. He definitely had the edge up on marketing expertise for any organization that he might be involved with. The founder had an evidenced reputable career as a CEO; he did not start an organization based on fly by night principles, but on the other hand no organization can possibly please everyone, so there is always the potential for miss- steps that will offend someone, that is not intended.

      But never the less, autism speaks apologized for any offense taken in that interview that I provided a link to. Sorry, I can see how you might of thought that I intended that my comment was the apology when I said here it is, but that was my response to your request for a link:)

      Delete
  19. Are you aware that the Autism Organization endorsed on the Autism Speaks fact sheet on the ASAN website, and here, the Autism Society of America (ASA), has the same rating of 2 out 4 stars from the Charity Navigator organization in Financials as well as the same overall high rating of 3 out 4 stars? Also, wondered if you were aware that Autism Speaks spends a larger portion of their funding on family services than the ASA organization, and a much larger amount, considering the total funding Autism Speaks receives?
    http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=8321

    The ASAN website fact sheet argues autism speaks has no autistic board of directors, and refers to John Elder Robison whom has contributed much input to that organization as a token Autistic.

    There are no reported individuals serving on the ASA board of directors that this site and ASAN endorses on the website fact sheet, diagnosed with an autism spectrum disorder.

    Autism speaks has always been careful to use people first language in describing the disability/disorder of autism in children. ASAN suggests in the fact sheet on the ASAN website that autism speaks is attempting to portray autistics as individuals that must be eliminated from society, when the organization portrays the disability/disorder as an issue separate from the unique individual who has the disability/disorder.

    Since Autism Speaks origin, regressive autism has been determined by research as a disorder inclusive to children diagnosed with Autism whom have abnormal brain growth, not affecting the majority of other individuals diagnosed with autism spectrum disorders.

    There was no way and there still is no way to address the cause and potential prevention of this often incapacitating disorder other than research. Some of these children have been portrayed by autism speaks, in the past, as they are in reality, severely incapacitated by a disorder of brain function that limits their ability to communicate with the external world.

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    1. Autism Speaks will claim that there is a consensus on person-first. Within the community of those who are actually autistic (and not just the ones who have been labeled as high-functioning) there is no such consensus. It is pretty common to have their insistence upon person-first language ONLY as one of the things people don't like about them, actually.

      Delete
    2. The online autistic community is only representative of several thousand individuals with autism spectrum disorders that have provided an opinion on this, which is a tiny portion considering there are an estimated 1.5 million individuals with autism in the United States. Autism Speaks has never claimed there is a consensus on person-first language among individuals who associate their identities with the disorder, however they answer to an entire nation of supporters, who in general follow the general disability movement for what is seen as proper usage of person first language and disability.

      They base these decisions on the science of marketing; if they use different language they risk the result of alienating the target audience that supports the organization, which is basically the general public, whom can empathize with those with disabling conditions.

      Delete
    3. Ahahaha. The general public empathizes with people with disabilities? I guess that's why they tell us we're broken, that we destroy our families, that if our parents murder us or institutionalize us in abusive facilities it's understandable, and that the world would be a lot better if not one more person like us ever existed. And then they say WE have no empathy or social skills!

      Delete
    4. Not everyone in the general public can empathize with people with disabilities and not all do that can, but there is concrete evidence that tens of millions of individuals do make a volunteer effort to support those with disabilities.

      Autism Speaks alone has over 340 thousand volunteers that are involved in charitable walks, averaging close to 180 per year, involving millions of additional individuals that support that effort to fund autism speaks mission for research, awareness, and education efforts associated with autism spectrum disorders.

      Autism Speaks uses first person disability language, and does not refer to autism spectrum disorders as an identity of an individual. The organization targets symptoms and co-morbid conditions associated with a disorder that many do struggle with. Autism speaks as an organization has not been evidenced as directing any of those comments toward human beings.

      It is rare that anyone personally identifies with an APA DSM defined disorder, that continues to change over the course of time, depending on how that organization sees fit, but it appears to provide a degree of social cohesion in autistic online community environments. I see nothing wrong with that.

      As one diagnosed with an autism spectrum disorder later in life, working with thousands of individuals in the general public over a couple of decades, it is rare that one comes across this in face to face interaction. Autism Spectrum disorders are still rarely acknowledged in the adult community. I came across one individual whom disclosed a diagnosis over the course of a couple of decades. But likely there were more, just not a usual topic of conversation, in larger face to face interaction society.

      I never heard of Autism Speaks until I visited an online community a couple of years ago, and saw the various topics highlighted with that catchy phrase. Never being one to follow the herd, it didn't take long to do my own research, to determine it was a reputable organization through reliable third party watchdog groups that thoroughly analyze charitable organizations.

      There are thousands of other autism associated charitable organizations that can be found with a quick search on the guidestar.org website.

      Unusual that this one organization would gain all the attention since there are many others with similar missions and funded goals, but I suppose that it provides an additional level of social cohesion in an online community for those seeking a common enemy as a social bond, not unlike what one sees in larger society with those whom follow football and find common enemies in opposing teams, what one sees along party lines in politics, or opposing religious ideology.

      I suppose the autism speaks online controversy provides some evidence that individuals with autism spectrum disorders in online communities share this common element with those that are not diagnosed with autism spectrum disorders; sharing common enemies, in part, to gain social cohesion, that seems to be part of the general tribal nature of human beings.

      Delete
    5. It's also because Autism Speaks is the most visible, well-funded and socially powerful of such organizations. Where a group has clout enough to have, as you have said, hundreds of thousands of volunteers, have walks nationwide, and make millions of dollar per year, and are one of the three autism-related things or people that people generally know about (Temple Grandin and Rain Man being the other two), that's a lot of power, and when it's being put to stigmatizing uses contrary to the express wishes of members of the population it claims to represent (and it can't be argued to me that Autism Speaks doesn't... I'll believe that when it renames itself Parents of Autistics - oops, I mean People with Autism - Speak), it has to be held accountable in proportion to the power it wields.

      Also, it's not that a few people here and there are ableist against Autistic people. It's pervasive, and well-supported by the culture. There is frequently no justice for Autistic victims of murder and abuse, and if anything sympathy and support for the perpetrators, who at best were doing it "for the Autistic person's own good" and at worst were "stressed out and in need of support." The so-called treatment we get is often aimed more at teaching us to be normal than teaching us to be functional as ourselves, and all too frequently our actual problems resulting from autism itself such as sensory integration difficulties and executive functioning problems get written off as character defects to be punished and "gotten over" rather than accommodated. Not only are we discriminated against, abused and thought less of, but the culture has the gall to assume that all of these things are inherently part of being Autistic rather than something it has direct control over. Autism Speaks both relies on this ableism - in that, if the culture wasn't ableist to begin with, Autism Speaks would not have as much traction as it does - and perpetuates it by how they talk about and portray autism, and thus Autistic people.

      Delete
    6. @Chris, first of all I want to make it clear that I was diagnosed with an Autism Spectrum disorder later in life after adapting through adulthood, per my own trial and effort methods, beginning as a non-verbal child. I have a sister diagnosed with an autism spectrum disorder, and had a child that did not survive due to an immune system problem co-morbid with autism spectrum disorders. I have a full perspective of the society related issues you address.

      I attempt to measure life with a yardstick of reason, and have analyzed the autism speaks organization by that yard stick. I've studied the organization but don't financially support it. I have a local organization, and per my own tribal nature, I would rather support that organization. But, never the less the Autism Speaks organization is evidenced as doing vital research associated with the full Spectrum particularly in their recent efforts associated with the DSM5 issues.

      You bring up a point that appears to be a major point of miscommunication as to how autism speaks is perceived by some. The organization per the link below, was founded per the phrase autism speaks to give a voice to disenfranchised parents of children with regressive autism, the condition that the founder's grandson had. Of course there is a play on words; the major disability of regressive autism is the fact that children lose their ability to speak.

      Other autism spectrum disorders came with the full package of autism above and beyond the immediate concern of the founder of that organization. His concern was a well evidenced one per the seriously disabling condition of regressive autism, that has recently been linked specific to abnormal brain growth in males diagnosed with that condition.

      And as one can clearly see in the marketing efforts early on in that organization, it was focused on that sub-group of autism. One good thing about all the attention provided to autism speaks by those in autistic online communities, it provided some anecdotal evidence that Aspergers may be more prevalent in society than what limited statistics have suggested so far in the US.

      http://www.autismspeaks.org/about-us

      Autism Speaks is now one of the few evidenced Autism advocacy research organizations that has moved it's focus into all demographics of Autism Spectrum disorders. This research is an open book disclosed to the public, evidenced on the website of Autism Speaks.

      The evidenced culture of autism defined on the internet is a relatively small one per the overall approximate 1.5 million individuals understood as diagnosed in society. However neither the small group or the larger group may represent a significant number of adults potentially diagnosable that have no idea what autism spectrum disorders are.

      Autism Speaks is addressing that issue in their current research; no other organization private or government has attempted to assess it in the full scale of Autism Speaks current effort. It is close to a million dollar effort, and a result in part, of the volunteer efforts associated with autism speaks.

      To this point the limited statistics associated with the major constitution of online autism autistic communities, Aspergers, is evidenced close to 5% of current available statistics available on autism spectrum disorders in the US, PDD NOS close to 70%, Autism Spectrum Disorder 20%, and sub-clinical assessed HFA close to 5% along with the other two very rare disorders, per numbers provided by Wiki, when one converts fractions into percentages.

      Autism Speaks funded research may finally shed a larger light on those statistics.

      Whatever ideological differences may exist per semantics, it is simply not reasonable to refuse to acknowledge this research as beneficial to those associated with the full spectrum of autism, per any reasonable standard.

      Delete
    7. Just to clarify the previous remark should have been addressed to Shain not Chris.

      Delete
    8. And to Shain, oops wrong link, this is the correct one per my response to your post above, http://www.autismspeaks.org/about-us/founders-message.

      Peace out.

      Delete
  20. While obviously not everyone can empathize with people with disabilities and not all do that can, there is concrete evidence that tens of millions of individuals do make a volunteer effort to support those with disabilities.

    Autism Speaks alone has over 340 thousand volunteers that are involved in charitable walks, averaging close to 180 per year, involving millions of additional individuals that support that effort to fund autism speaks mission for research, awareness, and education efforts associated with autism spectrum disorders.

    Autism Speaks uses first person disability language, and does not refer to autism as an identity of an individual. They target symptoms and co-morbid conditions associated with a disorder that many do struggle with. Autism speaks as an organization has not been evidenced as directing any of those comments toward human beings.

    It is rare that anyone identifies with a disorder, but it appears to provide some degree of social cohesion in autistic online community environments.

    As one diagnosed with an autism spectrum disorder later in life, working with thousands of individuals in the general public over a couple of decades, it is rare that one comes across this in face to face interaction. Autism Spectrum disorders are still rarely acknowledged in the adult community. I came across one individual whom disclosed a diagnosis over the course of a couple of decades. But likely there were more, just not a usual topic of conversation, in larger face to face interaction society.

    I never heard of Autism Speaks until I visited an online community a couple of years ago, and saw the various topics highlighted with that catchy phrase. Never being one to follow the herd, it didn't take long to do my own research, to determine it was a reputable organization through reliable third party watchdog groups that thoroughly analyze charitable organizations.

    There are thousands of other autism associated charitable organizations that can be found with a quick search on the guidestar.org website.

    Unusual that this one organization would gain all the attention since there are many others with similar missions and funded goals, but I suppose that it provides an additional level of social cohesion in an online community for those seeking a common enemy as a social bond, not unlike what one sees in larger society with those whom follow football and find common enemies in opposing teams, what one sees along party lines in politics, or opposing religious ideology.

    I suppose the autism speaks online controversy provides some evidence that individuals with autism spectrum disorders in online communities share this common element with those that are not diagnosed with autism spectrum disorders; sharing common enemies, in part, to gain social cohesion, that seems to be part of the general tribal nature of human beings.

    Unusual that groups of online individuals would find a common charitable organization as an enemy for social cohesion, but it appears that there aren't many limits on the internet per human behavior, regardless of diagnosed condition.:)

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  21. If Autism Speaks only focused on so-called "regressive autism," they would be out of business in a heartbeat. They DEPEND on all the other "autism spectrum" diagnoses to raise funds. Also, please cite your sources if you give statistics. They really do not mean anything unless you cite a source.

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    1. Yes that is another really important point that gets lost in these discussions. If they are using statistics like 1 in 166 and the even higher rates to raise money. Those are numbers that depend on all of us. Not just regressive. Not just with a certain IQ or language skills level. All of us. So being that they are raising money and awareness using all of our existence to prove their points. They do not get to turn around and say "We only mean those who regressed. Or those with below certain IQ. Or below certain language skills. Or without the ability to live independently." They don't get to use all of us when that's convenient to them, and then say it is only some of us when that is convenient to shut us up.

      Delete
    2. @Paula,the organization started with the focus on regressive autism, as evidenced in the link above, the focus was expanded after this point to the rest of the spectrum, but the focus remained consistent with that more disabling form of autism at first, per personal concerns of the founder, expressed in the link above.

      http://en.wikipedia.org/wiki/Epidemiology_of_autism

      "Most recent reviews tend to estimate a prevalence of 1–2 per 1,000 for autism and close to 6 per 1,000 for ASD;[1] PDD-NOS is the vast majority of ASD, Asperger syndrome is about 0.3 per 1,000 and the atypical forms childhood disintegrative disorder and Rett syndrome are much rarer."

      The CDC previously estimated cases of Autism in the US at 1.5 million in 2009, the CDC has updated that figure estimated at 2 million children. There are no total estimates for the entire population as discussed in a previous post, however Autism Speaks has funded a three year study, per their website, funded at close to a million dollars to determine population wide prevalence, the first study of its kind in the US, and a potential future model for CDC prevalence studies.

      At this point in time the 1 in 88 per the CDC's current research is limited to 8 years olds across the country receiving services in classes for the developmentally delayed. These are the government statistics most organizations have relied on that have steadily increased in prevalence over the last few CDC funded studies.

      http://www.autismspeaks.org/science/grants/autism-and-developmental-disabilities-monitoring-network-augmentation-screening-and-a?destination=about-us%2Fgrant-search%2Fresults%2Ftaxonomy%3A9771+south+carolina

      http://www.forbes.com/sites/robertglatter/2012/04/23/april-is-autism-awareness-month/

      Here is the study providing information on the impact of the DSM5 revision of autism spectrum disorder.

      DSM5 study link: http://www.autismspeaks.org/science/science-news/autism-speaks-funds-research-impact-dsm-5-autism-diagnosis

      And here is the link to their 2012 research restrictions expanded to the entire spectrum of which cure is not part of their restricted research goals for 2012. There is still an overall goal listed of cure in their general mission, however it is not currently pursued per their current research goals; a definitive cause would be required for that possibility and as we all know science is far from reaching that goal, and it does not appear possible at this point in time, as research indicates there are an almost unlimited number of causal factors associated.

      http://www.autismspeaks.org/science/grants-program/open-grants-how-apply

      If I've missed any references you are interesting in seeing, please let me know and I will be happy to provide it. :)

      Delete
  22. If we are looking at historical information (even though no sources are cited, let us not sanitize it as something that is all about "helping" people on the autism spectrum. "ABOUT AUTISM SPEAKS
    Autism Speaks is dedicated to increasing awareness of the growing autism epidemic and to raising money to fund scientists who are searching for a cure." http://www.autismspeaks.org/about-us/press-releases/autism-speaks-and-cure-autism-now-complete-merger
    The term "any reasonable standard" is an indicator of one thing only: the writer's (speaker/communicator) belief that their opinion is reasonable.
    In addition, to Anonymous above, I am very sorry you lost a child, speaking as one parent to another, and not speaking about autism but about the loss of a child for any reason.

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    1. Thanks for the kind words, and again if I have missed any references from my post above, or you would like clarification of any of my points, please let me know and I will provide them.

      Delete
  23. Autism Speaks is on record for believing that it is "philosophically inappropriate" to support the use of Medicaid funding for the tens of thousands of children with autism spectrum disorders who can't afford private health insurcnce and whose treatment could be funded 100% without cost to their parents through the EPSDT mandate of Medicaid. If you don't know about EPSDT funding, you're missing "the greatest treatment funding secret ever concealed" -- it is available in 36 states to families regardless of income, and in all 50 states, it is there to provide funding for necessary treatment of all kinds. Visit www.ibc-pa.org or www.TreatmentPlansThatWorked.com for more information. Autism Speaks isn't the only "advocacy" group that ignores Medicaid as a funding source, either. They all do.
    Steve Kossor
    Executive Director
    The Institute for Behavior Change
    www.ibc-pa.org

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    1. This opinion doesn't appear to reflect actions by Autism Speaks as Autism speaks is evidenced as advocating treatment expansion coverge for individuals with autism through medicaid coverage. And have also worked to expand coverage through the EPSDT, per links below:

      If you have evidence indicating otherwise please provide a link.

      http://vtdigger.org/2012/03/02/48664/

      http://www.autismvotes.org/site/apps/nlnet/content2.aspx?c=frKNI3PCImE&b=3930723&ct=11674731

      Delete
  24. Anonymous Mystery ManJuly 9, 2012 at 3:19 PM

    By the way, to all the "Anonymous" posters:

    It is very confusing and increases miscommunication when you have multiple "Anonymous" posters making multiple posts, and can't tell who is saying what.

    You don't have to use your real name. Make up one. Use a letter. Call yourself Anonymous 1, 2, whatever.

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  25. It's going to be hard to convince new people coming to the blog to do that, that have experienced censorship on many of these other neurodiversity blogs, without any explanation, when a very polite reasonable view of opposition is presented.

    I have no idea if I am being censored or not, as I have to make multiple attempts to get some of my posts through, but since I am usually eventually successful I suppose it may be a problem with the internet site instead of intentional censorship. It does though make me hesitant to use a personal identifier, that might result in censorship after putting time and effort into what one hopes is a polite reasonable response, oppositional to prevailing viewpoints.

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    1. This is the author of the blog. You're not being censored. All comments are supposed to be published immediately after people click "publish comment" or whatever the button says. I receive an email immediately that contains the text of the comment so that I can read them right away (or whenever I check my email.) For your comments, I have received multiple copies of the same comment but with different timestamps. I have no idea why. I have ceased to closely read this discussion.

      Delete
    2. Thanks for clarifying that. I suppose there must be some type of glitch with the website, otherwise there would have been duplicate comments as well as duplicate emails, since there is no way for the person that publishes the comment to delete them once they have been published.

      I apologize that you have gotten those duplicate emails, but am glad you realize that it is not an intentional issue, on my part, as well. Unfortunately, I am sure it is happening to others as well, who likely consider their comments censored and don't try to publish them again, as I may be a little more tenacious than some.

      However, if you don't mind, since you are associated with the ASAN organization, can you provide a reason why the ASAN organization criticizes autism speaks for their charity navigator ratings while ASA receives the same 2 star rating in financials, 4 star rating in accounting and transparency and 3 star overall rating, which is the highest overall rating of any autism organizations the charity navigator organization rates, that both ASA and Autism Speaks meet. And why autism speaks is criticized for no individuals disclosing an autism spectrum disorder on their board of directors while ASA also does not have any individuals whom disclose an autism spectrum disorder on their board of directors.

      If ASAN is not aware of these facts, as well as the other information that I have evidenced in some of the emails I'm sure you have seen, associated with my comments here, even if you don't feel this is the arena to answer that question, as you seem an honorable person, since my comment by email form have been ignored by the ASAN organization, I would appreciate it if you could at least forward them to that organization in hopes that the fact sheet regarding autism speaks could be corrected to more fully represent that Autism Speaks meets or exceeds the standards they are criticized for in comparison to the ASA organization that is endorsed on that same fact sheet, since you are a respected part of that organization, and not likely ignored.

      If at some point in time, ASAN corrects that miss-step, I will certainly praise the organization for arising to the ability to correct mistakes, and would not expect a public apology to the Autism Speaks organization or those that volunteer and support the organization with the best of intentions toward individuals with autism spectrum disorders, that do suffer from associated symptom and co-morbids, some of which can indeed be fatal.

      Sorry, but it disgusts me when the serious nature of the research autism speaks is doing, is not taken seriously considering that lives are indeed at stake for some of these children with autism whom have these co-morbid conditions. If any of those individuals who take light of what autism speaks is doing or resort to calling it a NAZI organization have a child with a serious co-morbid condition that only research can provide an answer for, it is likely they will be singing a different tune at that point, if they care about their child.

      I realize I am not very concise per my communication abilities, but it is much more difficult for me to communicate than what may appear as overkill in rhetoric. I'm always running over the character limit, before I realize I've gone on too far again:). And I hope I don't seem impolite in my tone, but I can be blunt in presenting facts.

      I do have empathy for other parents that support autism speaks whom have or have had sick children with co-morbid conditions like my child had. If ASAN does not want to cooperate in force with that valued mission, I'm not going to judge that organization on it, but I am not going to be silenced by that organization, when an obvious injustice is being done to criticize the organization for what appears to be mostly misunderstandings in the semantics of language, mission goals, and perception of public service announcements.

      Delete
    3. I just checked the back end. Apparently a crapton of comments are being automatically marked as spam. Problem solved.

      As for your question, I do not represent ASAN here and cannot answer on behalf of ASAN. This blog represents my personal opinions only; they may or may not align with ASAN's, and whether they do or not, they still don't represent an ASAN position.

      Delete
    4. Thanks, I just sent another updated email to ASAN, since I have become aware of more apparent injustices on that fact sheet since the last email, and politely asked for a response; I am still interested in your personal opinion on the representation of the facts associated on that fact sheet that do not appear to be fair criticism based on the fact that the organization endorses ASA, meeting or falling short of those same standards that autism speaks meets, however can understand a reluctance to offer one as you are associated with that organization.

      I suppose if they further ignore my comments, I will continue to offer them for those that share similar sentiments. But, I will no longer discuss the ASAN fact sheet here, now that you have provided a reasonable response, out of respect for the fact that this is your blog and you are associated with that organization, unless you care to continue the conversation, as I am interested in your personal opinion on this issue.

      You have made me comfortable now in providing a distinguishing anonymous; I see no reason for concern of censorship here, as long as my comments are polite and reasonable.

      Thanks again.

      Delete
    5. @Lydia, I have been unable to publish a response to Voyra Yarow, in the responding to autism speaks article that you authored, as she references my child in that response, in a disrespectful manner that I do not appreciate, in trust that it is the internet site that is the problem and I am not being censored for offering a different point of view, so I am providing that response here, in case it is an issue with that particular article, in defense of my child, and the insinuation that I am not an individual here with an autism spectrum disorder, in what appears to be an attempt to discredit my opinion in deference to discuss and disagree with counter evidence, if can be provided.

      @ vorya Yarow: I don't appreciate your comments about my child, per your last comment in the responding to autism speaks article, 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
  26. Just call me Anonymous 3.14159...

    Here's one person's anecdotes to support her opinion that Autism Speaks "awareness campaigns" are harmful to adult autistics.

    In 2010, I tried to get employment services from the local Voc Rehab office and my counselor said she would not accept my autism diagnosis--because my my symptoms didn't match what she read about autism on the Autism Speaks website. According to her, I was lying about my diagnosis because I wasn't intellectually disabled, I could look her in the eye, and I had been married for 10 years. Therefore, I couldn't possibly be autistic, and I just needed to accept that my communication problems, sensory problems, and difficulty reading social cues were psychiatric symptoms. To receive further services, I would need to sign a medication contract because obviously meds would fix those problems.

    Later in 2010, when I moved into a subsidized apartment building for low-income people, I asked the case manager assigned to our building how I could get services for my autism. (This is not a group home, boarding house, halfway house, or any such place, but the management has a case manager to help people connect to community resources.)

    She said she didn't know anything about autism but was willing to learn about it... and educated herself from the Autism Speaks website. She concluded that I must be intellectually disabled, and told the manager of our building that I had lied on my application because autistic people wouldn't have rental histories because they live in institutions.

    The management took this information and discriminated against me by telling me that I "needed to learn how to live in an apartment," wouldn't be allowed to use the stoves in the common area kitchens because that would be unsafe*, would have a 9pm curfew because it is not safe for me to be outside at night, would not be permitted to talk to other tenants, and would not be permitted to make repair requests in writing. The manager also said that he and his staff would keep an eye on me, and if I did anything "peculiar" they would call the police to commit me to a mental hospital. Not a warning, of course, just their way of showing concern for my safety and that of others.

    This how people in positions of authority interpret the information presented by Autism Speaks and use it to justify discrimination and disrespect, either because I don't fit the stereotypes or because they bend me to fit the stereotypes. Nobody should be treated this way, no matter what their diagnosis is (or isn't), but the way Autism Speaks portrays us as tragedies with no redeeming qualities just invites disrespect and pity or disgust.

    *For the record, I've spent about a decade running up student loan debt and doing a lot of science involving Bunsen burners, so I think I can manage a kitchen stove. Spilling water when I clean things and being an innocent bystander when my water heater springs a leak while I'm asleep, that's something else.

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    1. As far as information provided on the Autism Speaks Website your argument isn't with autism speaks it is with the DSM organization and Government CDC organzation as the Autism Speaks organization provides third party information on autism generated by the criteria provided by those organizations , just as is the case with most other autism awareness efforts provide on the internet.

      Intellectual disability has never been an integral part of autism, instead a co-morbid condition, associated with some cases of autism. This is how it is presented on the Autism Speaks website. As well as the fact that it is present in the minority of cases of autism spectrum disorders, as evidenced by the CDC supported research.

      It's not Autism Speaks fault if the people that discriminated against you can't properly comprehend information provided on a website. It's unfortunate if you were not aware of your rights under the ADA, Americans with Disabilities Act that protect against this type of discrimination.

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  27. YEAH, BUDDY! TELL THEM MOFOZ OFF!!!!

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  28. It are the associated disorders which are the problem (depression, social fears, attention deficides, tendecies to OCD, etc.). At least for me.

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  29. I have no particularly close connection with anyone with autism, but the TV spots for Autism Speaks have always bothered me. I saw one again while battling insomnia tonight/this morning, and finally took the time to google the phrase "autism speaks misleading statistics". I think this blog entry is right on the mark, and it matches my own feelings as a person with epilepsy toward the Epilepsy Foundation of America. Organizations begun by PARENTS of children with a condition tend to have very different concerns from adults who have grown up with that condition and will live with it our entire lives. Specifically, some parents just cannot get past the feeling that their child has been afflicted by tragedy, and they grasp at any straw to believe this can be "undone" somehow. Don't get me wrong--I take my seizure medication faithfully, and I know it has greatly improved the quality of my life. But I do HAVE a life, epilepsy and all. The EFA has never done a thing for me, not even when I wrote to them about a TV program that had given the impression that all epileptics are "mentally retarded" (which was the term for intellectual disability at the time). They wrote back and said that after all, SOME are, and anyway, none of them had seen the show "because we all work during the day." (I was a graduate student at the time.) The EFA is for parents still reeling from a child's diagnosis, not for adults like me. And if the EFA tries to raise funds in my town, I have every intention of going and making a scene.

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  30. I read Flowers for Algernon in Advanced English today. It reminded me of why I don't want a cure.

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  31. I understand a lot of your complaints against this organization. But why wouldn't you want to be cured? I struggle with depression and OCD and GOD I would give anything to NOT have to deal with that, and it's not even as intense as some people deal with.

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    1. You have been brainwashed by an ableist society in believing that autism is a completely negative thing that needs be cured. You have been brainwashed by organizations who only focus on the negative aspects of autism. In reality, many autistic people enjoy certain aspects of their autism and even sees them as advantageous. Yes, my autism makes certain things hard for me, but what I need is love, support, accommodation, and acceptance/understanding, not a "cure". A cure isn't going to make it better, because autism cannot be cured. It is not a disease, it is the way my brain developed. It is my neurotype. Even if my autism can be "cured" it would mean someone completely new moving into my body. My autism makes up who I am as a person and makes up many aspects of my personality and way of thinking. I would rather be myself than be stripped of identity just so I can "fit in".

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  32. Ignorance/ableism is strong in the comments.

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  33. Autism Speaks would have you believe that its only opponents are "misguided high-functioning people." That is not true.
    I agree. As a low functioning Autie, I too despise and oppose Autism Squeaks'.
    @ Alicia: I feel sorry for you. While I understand your motives in joining in with the Autism Squeaks walks, the fact is that they rake in loads of money from people like you and those you got to sponsor you on the walk, then pay out not 5% of it to families with Autistic members so they can use it on therapies that will help their loved ones, instead choosing to spend it on researching methods of genocide. Scary, no?

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