22 March 2012

Responding to Autism Speaks

Earlier this week, I received an email from the President of the College of the Holy Cross, Philip L. Boroughs, S.J., who is also the former Vice President for Mission and Ministry at Georgetown University. It turns out that the co-founder of Autism Speaks, Bob Wright, is a Holy Cross alumn, and Holy Cross has planned on supporting Autism Speaks through the Light it Up Blue campaign this April. In the same email, I was asked whether I would commit to advocating for Georgetown to participate in the same campaign.

I wrote a response to that email, which appears to have been taken into serious consideration, and I am hopeful that Holy Cross will decide to put its time and effort into more worthwhile and constructive efforts to support the autism and Autistic communities. This is my response to the email I received. After reading this, please consider writing polite and diplomatic letters to the College of the Holy Cross urging them to develop and participate in more positive and constructive initiatives supporting the Autistic community. If you write a letter, focus on the positives -- the response that I've received was positive, so more positive prodding may prove to be beneficial, whereas angry letters may hurt the potential to produce something constructive.

TASH New England hosts its annual conference at Holy Cross as well, so please urge them to support organizations like TASH or the Autistic Self Advocacy Network or the Autism National Committee or Autism Network International.

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Dear Father Boroughs,

Thank you for writing. I appreciate your commitment to supporting the cause of advocating for Autistic people and the issues that affect us, and I strongly support your willingness in reaching out to those of us with a vested interest in autism issues. As Dr. Lord may have told you, I am Autistic myself, and am deeply involved with the autism and Autistic communities as a self-advocate, that is, as an Autistic person who is also involved with advocacy.

I realize that it's probably too late to cancel "lighting it up blue" for Autism Speaks, but I am very disappointed to see that you have chosen to support an organization that nearly all Autistic adults do not support and cannot condone. I cannot condemn Autism Speaks strongly enough.

Autism Speaks routinely excludes Autistic people from discussions about us, and to date, has not one single Autistic person in its leadership either nationally or locally. This goes against the principles of the disability rights movement, where organizations representing people with disabilities have many people with disabilities represented in their leadership, if not running and directing the organization altogether. In response to criticism over this, Autism Speaks appointed one Autistic adult to one of their advisory boards two years ago, but this is one Autistic person on a board with twenty-nine other people, none of whom are Autistic. There remain no Autistic people involved in the actual administration and direction of the organization.

Autism Speaks has repeatedly used inaccurate and offensive material as marketing and fundraising tactics, including their public service announcements. One of their earlier PSAs, "Autism Every Day," featured their former Vice President Allison Tepper Singer on camera saying that she considered driving off a bridge with her three year old Autistic daughter and that the only reason she did not do so was because she had a non-Autistic child as well waiting for her at home. Her Autistic daughter was in the room when this was said, and this was aired as a PSA. In a more recent PSA, "I Am Autism," images of Autistic children and their families are set to a voiceover claiming to "be Autism," and saying things like, "I will destroy your marriage. Your child will never have friends."

Autism Speaks's ultimate goal is to cure autism and create a world where Autistic people like myself no longer exist. Most Autistic adults and youth strongly oppose the idea of "curing" ourselves because we do not believe that we are defective, broken, diseased, or in need of being fixed. Having a disability does not mean that there is something wrong with us. Yet because Autism Speaks does not represent Autistic people or speak for us, they can put their efforts into looking for something that most of us do not want. This includes Autistic people who are visibly disabled, severely disabled, and non-speaking, as well as Autistic people who do not present as very disabled.

Autism Speaks claims to provide family and community services, but in fiscal year 2010, they provided about $50,000 in grants for family and community services, while giving over $16,000,000 in grants for research, nearly all of which was to find a cure for autism. There are critics of Autism Speaks even among those who do want a cure for autism -- whether or not one wants a cure for autism, there is not a cure now, and much of that money could be going to much better activities, such as research on pragmatic topics and issues that affect Autistic people now, or providing services and supports for Autistic children, youth, and adults.

Additionally, Autism Speaks implicitly and tacitly allows dangerous misinformation about the science of autism to spread, such as the repeatedly debunked claim that vaccines cause autism. People in the anti-vaccine movement have caused numerous outbreaks of preventable and nearly-extinct diseases in the United Kingdom and the United States for fear that vaccines will cause their children to be Autistic. Children have died because of this. Former Vice President Allison Tepper Singer, who appeared in the "Autism Every Day" public service announcement, actually resigned from Autism Speaks because they refused to publicly and unequivocally take a stance against such false and dangerous scientific misinformation. (That does not, however, excuse the fact that she has to this date refused to apologize for the statements she made in that video.)

The majority of people do not know that there is such controversy with Autism Speaks because most people assume that any organization dealing with autism must be doing good things for the community. Bob and Suzanne Wright are very wealthy people with many connections, which is certainly one of the reasons that Autism Speaks has grown to be so influential and powerful in the community. Most people who support Autism Speaks are unaware of how offensive and demeaning their practices and language are to actual Autistic people. At the same time, organizations run primarily by Autistic people or that meaningfully include Autistic people, tend to be much less well known and have much less public attention.

As I said before, I am deeply appreciative of your interest and commitment in engaging the autism and Autistic communities and supporting efforts to raise awareness of the issues that affect us, but I cannot and never will be able to condone the support of any campaign launched by Autism Speaks.

"Light it up blue" does nothing to help Autistic people or bring attention to the most important issues facing our community. The color blue in relation to autism can only be seen in Autism Speaks's logo -- a blue puzzle piece -- and has nothing to do with us. We prefer to be thought of as people, not puzzles. This campaign is offensive and alienating to us rather than supportive of us. I strongly encourage you to consider alternative means of supporting the autism and Autistic communities, such as hosting roundtable discussions with Autistic self-advocates and our allies, sponsoring talks by leaders in the autism rights movement, showing documentaries such as Loving Lampposts: Living Autisticor Wretches and Jabberers, or adding material about autism rights and neurodiversity into any disability studies coursework on campus.

Thank you again for writing and reaching out to me, and please don't hesitate to contact me if you have any further questions or concerns. I hope to hear back from you.

Blessings and peace,
Lydia

41 comments:

  1. Beautifully put, Lydia! I hope you get a good response...

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  2. This is really powerful. You are completely right in thinking that 'most people assume that any organization dealing with autism must be doing good things for the community' - I was lucky enough to stumble upon this link on twitter, but beforehand I had no idea of the issues surrounding this... I really do hope more people get to read this article/letter - I'll certainly be retweeting it. :)

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  3. "Having a disability does not mean that there is something wrong with us."

    I'm afraid that this is exactly what it means, though. Maybe you mean is that autism isn't a disability ?

    I don't mean to express an opinion on autisme, about which I know next to nothing. This is rather a point of language.

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    1. Have you heard of the social model of disability? Educate yourself. Such thinking is decades out of date.

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    2. All too frequently, being disabled involves having other people tell us that there's something wrong with us, where that something just so happens to be something that we just live with or even like and wouldn't be bothered by if people just left well enough alone about it.

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    3. Having grown up autistic in the 1980s, I can tell you something about my view of what is or is not a disability.

      Close your eyes real tight for a moment, and imagine that the percentages of people in the world with the disability in question compared to the "norms" as I will call them in this example is reversed. For example, for every person who is neurotypical, there are 150 people who are autistic.

      The question you have to ask yourself is "would the people in the disabled group still be considered disabled?". In the case of blindness, paralysis, diabetes (which I live with), or asthma, to name a few examples, the answer is a yes. But if the ratio between the autistic and the norms was reversed, the norms would be considered disabled. I do not know about you, but not being able to care enough about a subject to research it down to the absolute hairs sounds like a disability to me.

      I am not disabled because I am autistic. I am disabled because growing up autistic in an enlightened age has left me with serious employment issues, PTSD, and an access to meaningful help that is comparable to a white man's access to South Africa. I take issue here with the "autistic = disabled" thing. But that does not mean I am not disabled in meaningful ways.

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    5. disability itself is not something "wrong." one out of every five people has some type of disability. it is a perfectly NORMAL part of life. it does not meant that one has a less meaningful life, or a less fulfilling life. being different IS normal and ok. disability can happen to anyone, at any time in their lives, regardless that they have have been born with typical abilities. disability means DIFFERENT, but not less than, and not wrong. what is wrong is the attitudes that society has toward individuals with exceptionalities. disabled individuals are often gifted in ways that typically abled people are not, and they have a unique perspective and voice, and opinions that are just as valid as anyone else's. disabled people are often happy and proud to be exactly as they are, and would not necessarily wish to be "cured" or to be typical. most would be perfectly happy, except to be constantly told that they are "wrong" or "imperfect" or "defective" by others.

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    6. Actually, if deafness or blindness were the norm, then no, it would not be a disability. Society would be build around the assumptions of normal abilities, so there would not be any obstacles to function. Someone who was able to hear/see would have "freakish" superpowers, sort of like someone with flying ability or x-ray vision would in our actual society.

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  4. As an ex-employee of AS, I definitely agree that there are significant issues with the company, especially at the upper level. That said, I would request a clarification. I worked on the research end of things, and while I certainly did not know what was going on in all of the programs, the research I was aware of was into the underlying _cause_ of autism, not a "cure". While I suppose one could attempt to use that knowledge to create a so-called cure, the researchers I worked with more interested in hoping to find something that would help the lower functioning autistics to be able to live more independently. The idea that an autistic person is "broken" or needs to be cured is NOT a common one within the research community.

    Take it as you will, but that's my two cents.

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    1. The concern is about prenatal testing, primarily... which, while it would do nothing directly to affect Autistic people alive now, it would mean a "cure" for Autism, in that (if the 94% abortion rate for fetuses that screen positive for Down Syndrome is any indication) people would simply not have Autistic kids anymore. The concern that I and other self-advocates have is that all - not just some, not even just the majority, but all - of the mainstream discussion about developing such a test supports this happening, and sanitizes the issue by ignoring the fact that an entire group of people would just eventually not exist anymore, or that that would mean anything.

      And the thing is, there are things that could be done to help Autistic people alive now live independently and otherwise more happily, that don't require understanding the causes of autism. Ending institutionalization and abuse and neglect in institutional settings, for instance, or increasing Autistic people's involvement in their own treatment and service plan development. It's the fact that Autism Speaks (along with other major autism charities and organizations) does not put its clout behind these measures, or even openly condemn things like the Judge Rotenberg Center's torture of Autistic people, the use of restraint and seclusion in schools, or the murder of Autistic people by their parents and caretakers, that plays in a lot to why Autistic self-advocates don't trust it. Well, that and the way it talks about autism and Autistic people.

      So in summary it's not so much the research itself as how people and organizations would (be likely to) use it, and how it's discussed and promoted that a lot of Autistic advocates object to, but they're pretty closely tied, especially without a lot of well-publicized discussion about the ethical issues involved.

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    2. The mind wonders exactly what you quit over. Because spending whopping amounts of money on flying celebrities around to speak at your rallies is a large chunk of money that could have been spent far better on, as you put it, helping the lower-functioning to live better.

      And as we have tried to point out to your kind so many times, if you want to represent us, you should relay the wishes of all of us to the media. Not just the Jim Crow model you make of us. Instead, you have worked for a group that sees us as nothing but a means to bilk people and governments with. To say that Autism Speaks and integrity do not belong in the same paragraph is to say that the autistic hate Autism Speaks. It does not even begin to convey the full meaning.

      Oh, and one more thing. People who have been trying to promote what the autistic want and how they view themselves in the public forae for as long as I have have a joke about the woman where the buck literally stopped at your former place of employment. If Suzanne Wright is not compared by people to Adolf Hitler, it is not for lack of ambition on her part.

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  5. This is a great letter. I hope they listen.

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  6. Wonderfully written and thank you for sharing! Just two weeks ago I sent them money in an effort to help a friend with raising money for an upcoming walk for their son with autism. I'll pass along your letter and hopefully this will help others understand where they can get the support they need.

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  7. Lydia, this seems to be a well thought out response you sent. However, while you make some good points, I cannot agree with all that you have written. I will try to go through point by point and stay relatively brief (probably not happening).

    First off, many times throughout this letter, you make claims such as the purported fact that Autism Speaks is "an organization that nearly all Autistic adults do not support and cannot condone". Would much prefer to see some sort of citation backing up this claim and other similar ones.

    As for the comment that no autistic people serve on the board and leadership of Autism Speaks, that's certainly a reasonable qualm. And one that people should continue pushing on.

    Those PSAs you mention... I haven't seen the first you talk about, but I personally found "I am Autism" to be a strong and powerful message against Autism itself (not the children and loved ones who have it). Certainly the first half is rather bleak, but the PSA is pointing out how family members may feel alone when faced with this situation. However it goes on to show how strong we can all be and how much we can help those in need when we come together as families and communities and actually talk about Autism itself. This helps to dispel misinformation and to combat the weakness associated with a challenge that science and people in general simply do not understand very well.

    You continue to make claims that "most" people agree, disagree, etc... again with nothing backing these statements up. It makes them sound like you feel you can just talk for everyone. Not everyone wants a "cure", true, but some people do. So you can disagree with how they spend their money, but it's just your opinion.

    My biggest issue with Autism Speaks, and major point of agreement with you would be that they should not continue to waste time and resources on the autism-vaccine connection.

    Overall it seems you may fully identify yourself as Autism. You don't want to change, you don't want a "cure". And that's fine, no one should ever force you to be someone you're not. But to assume everyone else feels the same is simply incorrect.

    You are of course welcome to not support Autism Speaks, and speak out against them. I just think your argument against them could be stronger. I look forward to reading your future blogs, as your passion certainly comes through with your writing.

    Thanks!

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    1. The problem with the I Am Autism video is that, in the minds of a lot of Autistic self-advocates, there's really not a whole lot of difference between "Autism will cause you to be embarrassed every time you go out in public with your child and will destroy your marriage" and "You, Autistic person, are an embarrassment to your parents and have destroyed your family"... especially for those of us who survived that exact mentality growing up. If the video had gone on to refute those myths on the basis that autism (and by extension Autistic people) does not, in fact, inherently destroy lives and families, that would've been one thing. But it didn't. It didn't say "there's hope, because autism isn't as hopeless as you think it is, and your Autistic kid's actually pretty cool as he or she is if you'd just give him or her a chance," it said "there's hope, because we're here to make autism go away." This is a very different message, with (especially considering Autism Speaks' earlier portrayals of Autistic people) very different implications about the perceived value of Autistic people as they are.

      As far as other Autistics possibly wanting a cure goes... if the choice of taking a hypothetical cure would truly be a free one, where every Autistic person had the ability to make a meaningful decision themselves without any kind of coercion, individual or systemic, then I would have no problem with that. However, that just would not be the case. If we're looking at a "cure" by prenatal testing, then consent of individual Autistic people or the Autistic community as a whole just doesn't come into it, and, more likely than not, there just wouldn't be any but a few Autistic people around at a certain point. If it's a cure for living people, there's going to be all sorts of coercion involved. As things stand, children have no real power to resist even harmful, intrusive and unnecessary medical or psychiatric treatment imposed on them by their parents. Autistic people who were non-speaking or otherwise perceived as "low-functioning" would be similarly at risk for having cures imposed on them, if not legally through commitment to facilities or guardianship, then socially because of people's assumptions about their capacity. Even for speaking Autistics who (to various degrees) could "pass" for neurotypical, there would be enormous societal pressure to take a cure, and - at least if things continue as they are now - not a huge amount by comparison to inform them of the other option. Probably we're not going to be anywhere close to a point where the decision WOULD be a completely free one on the part of individuals for a long time, if ever, and that's worrying, given how aggressive the push towards finding a cure is.

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    2. Too bad that your response could not be as well-thought-out Eric. Ever been on YouTube? The opposition to curebies is so fervent and aggressive there, from autistic adults of ALL stripes, that one does not need to cite anything when stating that the majority of the autistic oppose these fiends. All one needs to do is look in the right place and see for themselves.

      Additionally, in a video about the falsity of morals being connected to a deity, it is stated that when members of an oppressed group express approval of or attempt to justify their oppression, that is a reason to worry more about the group, not less.

      In a world where the people who understand us and demand facts rather than listen to lies are so scant, the mere fact of Autism Speaks being allowed to exist offends us all. This is not a matter where there are multiple opinions allowed and viewpoints to be considered. Autism Speaks denies us even the right to actually speak for ourselves, and should at best be prosecuted for fraud. Anyone who is alright with that is not alright with me.

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    3. Thanks for your reply Dean. And I'm sorry you did not feel that way.

      Yes, I've been on YouTube, and from my experience I would never consider the comments there to be of much value. Citations of actual studies or polls are helpful and can further a cause, while anecdotal discussions from random people on the internet are not. (Neither is the condescending use of "curebies"). The burden of evidence remains on the person trying to make the point.

      Oddly, I almost referenced Stockholm Syndrome in my first reply, but decided against it. However, I would have referred to autism itself as the captor that some people seem to think everyone should be fine to be oppressed by (claiming that no one needs or wants a cure). But you have chosen the people trying to remove those constraints.

      Again, I'm not saying every autistic person needs a cure, or anything of the sort. But to base the "majority of [the] autistic" as being a small random group of (most likely) high functioning autistic people who happen to post on YouTube is a terrible fallacy in and of itself.

      I'm also flummoxed as to how a group which is trying to help bring light to these challenges is considered so vile. You may disagree with their direction of funding, and think that some of their PSAs are inappropriate, or elicit unexpected and unwanted feelings. But to claim that they are actually harming people is a rather surprising and slanderous claim.

      You claiming that Autism Speaks is taking away your voice? It speaks louder than you? Then perhaps you should find another group that fits your views, or begin your own group with members who agree with your viewpoints. Combining your voices will help, but not if you continue pushing an agenda based on opinions and sweeping generalizations with no solid evidence behind them.

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    4. I agree with you Eric. I also like the relation you made to autism as the captor. Research is good, period. Of course as society learns more about autism, the more accepting it will become to autistic persons. I have 2 nephews who are autistic and I love them for who they are, but I know that it is difficult for their families to advocate for them. It is important for researchers to learn everything they can about autism. Treatments, teaching techniques, educating society about communicating with autistics... maybe people who are that upset with Autism Speaks should create their own groups? I do however, respect their opinions and learn from the different perspectives.

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    5. There are other groups that take a disability rights rather than cure approach, some of which (like Autism Network International and TASH) are older than Autism Speaks. The Autistic Self Advocacy Network is another example of an organization that is neurodiversity-friendly. Unfortunately, we don't have the budget nor the scare tactics to create one (tsunamis, kidnappers, epidemics...) to get as much financial, social and political clout. Equal rights and inclusion doesn't sell as well as fear.

      How accepting society will be of Autistics depends on what information is found, which in turn is dependent upon what information is sought. If people search for causes and then cures and "fixes" and finds information to that effect, it will be seen that there's no need to accept and understand Autistic people when one can just (try to) change them. If people search for ways to make Autistic people act more like neurotypical people, that will limit the amount of effort spent on understanding Autistic people as Autistic people and helping them to be their best Autistic selves. The information may be what it is, but whether or how it's found, how it's interpreted, and to what ends it's used will depend on who's funding and doing the research and why.

      The question needs to be asked and researched - not why does autism exist and how can we get rid of it, but why do societal exclusion and barriers to Autistic participation exist, and how can we get rid of them?

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  8. I feel afer reading this letter and other comments: where do we draw the line for cures and research? If someone is born with bad heart, or no hearing, or "left handed" where/when do we say it needs to be cured and when is it OK to accept it??

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    1. Linda, as I read your question about bad hearts, deafness, or being left-handed, I am truly gobsmacked. Being autistic is comparable to none of these things. Nobody has ever died as a direct result of being autistic. People die from heart problems at a rate of thousands a day. Your analogy is clearly a deliberate attempt at a slippery slope argument, and should not be tolerated by anyone on the spectrum.

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    2. No one has ever died as a direct result of being deaf, and plenty of people live with heart problems. Having a limb amputated or being born without a limb generally doesn't increase the rate of deaths. A disability need not endanger one's life in order to decrease someone's quality of life.

      I really don't get what people want. You want more services, more accommodations for people with autism - things that come along with having a disability, which means there is something that causes you impairment and you need extra assistances with. However, you don't want autism to be considered a disability, yet you think everyone should change their behaviours and expectations because you have autism. It is logically incoherent.

      If a cure or prenatal test was developed that would make people's lives easier, I don't get why you would oppose that. It is not genocide to help people deal with their problems or to prevent them from happening. If it were, then people who promote healthy eating would be committing genocide against diabetics, doctors who do cochlear implants would be destroying the deaf. An autism diagnosis requires impairment in functioning, why would anyone wish someone else to be impaired is beyond me.

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    3. You don't need to have a fatal condition in order for it to be considered a disability. Deafness, blindness, quadriplegia do not increase one's risk of death and yet most people consider them to be disabilities and rightly so, since people with those disabilities can be provided with accommodations to make their life easier. Autism by definition requires significant impairment in one's life, that's why it's a medical/psychiatric diagnosis and that's why people qualify for disability services. Are you saying that autism isn't disabling and therefore we should suspend all services and accommodations for autistics because there's nothing wrong with them? Or are you suggesting that our entire society needs to change so that autistic behaviour is considered the norm?

      If autism is impairing, and by definition it has to be, then why should there not be research into cures and research. Just because you don't want a cure doesn't mean other people don't. It isn't genocide or some horrible evil thing to keep people from having conditions that cause them impairments and suffering. And yes, most parents want to keep their children from suffering, what monsters. How dare they want their children to be as healthy as possible.

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    4. Dean - I am reading Linda's question as an entirely reasonable open-ended question about where to draw the line between traits that should be accepted and traits that should be cured. I don't think she's suggesting that autism is similar to heart conditions any more than left-handedness is similar to heart conditions - just that they're all traits that people have, at some point in time, tried to "cure." Whether the trait is fatal, as you pointed out, is a good place to draw the line.

      Anonymous - yes, autism, quadriplegia, deafness, and blindness are all considered disabilities. But even the quadriplegic, deaf, and blind communities have objected to society's obsessive focus on "curing" rather than accommodating them, and yes, some members of the ASL-speaking Deaf community actually object to the use of cochlear implants on children born deaf because it is a threat to their culture. This is the heart of the social model of disability and it's not unique to autism.

      For more reading check out this post by someone with paralysis and this discussion guide critiquing the Muscular Dystrophy Association's annual telethon. here's an excerpt from the latter in case you're still imagining that autistic people are being uniquely irrational:

      When charities implore the public to "help find a cure," they imply that the source of the problems that people with disabilities face is their medical conditions. Which means the answer to their problems is curing them. This is what is known as the "medical model" of disability. If disability is an illness to be cured then people with disabilities can't be productive members of society until they no longer have disabilities. And that leads to the message that society doesn't really need to support people with disabilities with things like accessible public transportation, integration in schools and equal employment protection. Yet these are the very gains made by the disability civil rights movement over the last thirty years.

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    5. Twitchy - Just because there are other communities with this view does not make it any less irrational. It is the height of selfishness to deprive a child without their consent of one of their basic senses in order to continue a community that is based on people who became deaf involuntarily. If a child gets in an accident and surgery can be done to prevent paralysis, should parents be prevented from having that surgery done because it would deprive the quadriplegic community of a new member?

      Disabilities are not merely a social construct. There is a necessity of a medical/psychological component to them otherwise they aren't disabilities by definition. All the social acceptance would not make a blind person see. Expecting society to radically change in order to accommodate a single disability is neither realistic nor rational.

      Furthermore, there is nothing that says that accommodations and treatments are exclusive. We have cochlear implants to prevent deafness in some people and we have captions and sign language and other accommodations for people who are deaf. We have handicapped ramps and elevators for wheelchair users and at the same time we can research potential cures and treatments for paralysis. Again, I see nothing wrong with science working to prevent impairments in people. Treating people with disabilities does not mean they can't be productive, it's the exact opposite - by making people's lives easier with a combination of treatments and accommodations, people can be more productive. Encouraging people to live with as much suffering as possible is irrational and unethical.

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  9. . Again, I see nothing wrong with science working to prevent impairments in people. Treating people with disabilities does not mean they can't be productive, it's the exact opposite - by making people's lives easier with a combination of treatments and accommodations, people can be more productive. Encouraging people to live with as much suffering as possible is irrational and unethical.

    TRIGGER: For language use of slurs in a ironic fashion


    You sound abled and privlieged. Shut up.

    Son, stop. You're projecting your own fear of having a disability into the people who are born disabled. Deaf are not suffering while being Deaf, people that are blind are not suffering, mobility impaired not suffering. It's paternalizing as fuck to assuming that you know the needs of PWDs and that normalizing them will make them happy. I guarantee you if you cure me of my Autism I will still be a miserable cuntboy.

    Curing me might have folks stop calling me a fucking retard, but they will just call me a fucking faggot instead. Having society not act like a bag of dicks towards PWD sounds a goal that can be done and in our reach.

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    1. 1. Thank you, "son," for assuming things about me when you have no idea who I am.. classy really.

      2. I will shut up, not because of what you said, but because arguing with neurodiversity activists is about the same as arguing with anti-vaxxers, birthers or religious fundamentalists. Any disagreement from the Borg mind is evil and having a different viewpoint makes you worse than Hitler. It's funny, the word neurodiversity - it sounds like something tolerant and accepting of everyone, when the only people you accept are autistics, everyone else, no matter their situation or disability are inferior compared to special autistic snowflakes. In the ND world all autistics are always right (unless they disagree with ND) and all non-autistics are evil horrible people. There's no debate, no dialogue - just accept all autistic behaviour as normal, and if someone is rocking in a corner and banging their head, can't communicate in any meaningful way and is in diapers - well that's society's fault - by no means, do not provide them with anything that could ease their symptoms and give them a 100k a year job. Of course a special exception has to be made for women, autistic or non-autistic, women are wombs with legs - they should not, at anytime be given any information about their pregnancy, and if they choose to terminate it - well silly women.. thinking they have a right over their body, we need more special autistic snowflakes after all.

      So yes, I'll shut up because arguing here is like talking to a brick wall, a crumbling, cracked brick wall that insists that repairing it is an act of the utmost evil. I'm sorry that I offended you all with my suggestion that treating impairments might be a good thing, what a horrible thought. Why all children should be made disabled at birth so they experience the joy, and any suffering, pain, death that results - well that's society and the evil NTs to blame.

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    2. Anonymous,

      Author of the original blog post here.

      Neurodiversity refers to the idea that all people with any type of neurological difference, whether that is learning disabilities, mental illnesses, developmental disabilities, intellectual or cognitive disabilities, or other brain-based disorders or disabilities, represent a natural part of human diversity in both phenotype and genotype. It is not and never has been specific to autism and Autistics.

      Neurodiversity proponents are also not homogeneous. Yes, there are extremists, as there are in any movement -- you refer to Autistic supremacists, who believe that Autistic people are superior to non-Autistic people. That idea is not mainstream or widely accepted in the Autistic community (the community of Autistic people.) Neurodiversity advocates very much include people who aren't Autistic but who have learning disabilities, mental illnesses, and intellectual or cognitive disabilities.

      You do, however, grossly mischaracterize what neurodiversity means. Those of us who believe in the neurodiversity model do NOT oppose medical treatment for medical conditions that Autistic people have, nor do we oppose interventions to mitigate and eliminate harmful behavior -- like hurting oneself or others.

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    3. From one anonymous to another, I wish i knew your name so I could say "I agree, (insert name here)! " spot on.

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  10. Lydia,

    As a woman with Aspergers, and mother to a son with Aspergers, I found this to be spot on how I feel about Autism Speaks and being considered on the Autism Spectrum. Having one Autistic individual on it's board or in it's consult, is a far cry from actually hearing us as a community.

    I don't want a cure. I'm fine. Society needs to quit discriminating against us and trying to get rid of us. It's a fine line between looking for a "cure" and genocide.

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  11. Very well written. I agree, autism should not be cured, acceptance IS the cure. My son has autism and he is a wonderful great little boy. We have been blessed with this wonderful gift from God for a reason. God bless you all. DO NOT let society impact you. Be who YOU want to be.

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  12. A.F.

    What is needed here is more understanding and compassion for everyone in the autism community. Autistic people as well as the parents and family. Lydia, you make important points and I have learned a lot from your writings. Like you, I dislike the word cure, you have a right to be who you are and loved for it. And like you, I have always found fault with Autism Speaks and its corporate ways. I was pleased to read your letter, Autism Speaks needs to change its policies and self serving attitude.

    But consider the autistic person who cannot speak or write or point who can't say if they have a toothache or are in pain, who has melt downs and self injures, self destructs and injures others...who suffers a miserable life. Would you say they have a right to be who they are?

    I am the mother of an autistic daughter who cannot speak, write or point...and I wish she could. It would ease her life. She is the most beautiful, wonderful person I know and I love her dearly but there was a time many years ago when I could have snapped, when life was unbearable, when I had no resources, no school, no money. I managed to get both of my children and myself through those dark years. We are fine and flourishing now but what if......There are parents who do snap, who can't go on and it is not because they hate their child, on the contrary, in most cases they love them too much...the thought of sending them to an institution is unbearable and they see no way out but murder-suicide. I have compassion for them too. The human brain varies in each of us. There is just so much one can handle before synapses break. Why not have compassion for them, why not be more gentle with each other.

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    1. But consider the autistic person who cannot speak or write or point who can't say if they have a toothache or are in pain, who has melt downs and self injures, self destructs and injures others...who suffers a miserable life. Would you say they have a right to be who they are?

      Yes, absolutely. It's nobody else's place to decide who they are.

      There are parents who do snap, who can't go on and it is not because they hate their child, on the contrary, in most cases they love them too much

      There have been children who have been thrown out of windows, beheaded, set on fire, forced to drink bleach, beaten to death, tied up and locked in a closet, and suffocated by their supposed caregivers? Do any of these things suggest love to you? You can't assume that parents kill their children out of love without knowing the facts, no matter how well that fits your narrative model.

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  13. Thanks to this article I stopped my school from doing Light It Up Blue.

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  14. Autism speaks is a joke. How home supports are delivered to autistic adult in California
    http://www.autismseizureselfinjuriousbehavior.com/2012/10/inside-look-into-how-autistic-adult-in.html

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  15. Thanks for this, Lydia. I was one of the people who assumed good things about Autism Speaks because they had 'Autism' in their name. I'm looking into the other organizations you mention in the top of this post and hope to support a better organization in the future.

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  16. Lydia, Singer may not have apologized, but at the very least, I can assure you that it DOES haunt her. Back in 09, I VERY directly criticized her for those words in an expose I wrote about Autism Speaks for examiner.com, and she made a half-assed effort to defend what she said in the PSA. She should save her worthless apologies for her therapist.

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  17. I now know why my wonderful Daughter, the mother, provider and champion for our Autistic Grandson, is so vocal about the BAD in this organization. What an eloquent letter, what an indictment of an organization that pretends to speak for those with Autism.

    David Crosby and many other musicians are performing in a benefit concert (Light Up the Blues) for AS on April 13th. I have written to David (one of the WONDERFUL human beings) and asked him to read this letter and ponder it's significance. I'm sure that the benefit will still happen and that David and the other well-meaning and caring musicians involved will still perform but this may help direct that intense energy and effort thwards a more worthy organization.

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