Does Autism Speak in SL?

by violet on 04/03/08 at 11:22 pm

Metaverse is a battleground for Autism Speaks and Autism Speaks Doesn’t Speak For Me groups

by Violet McGinnis

There are two sides to every coin. Granted, you won’t oftenfind the tails side of a coin loudly denouncing the actions of the head side;that’s where the analogy rings untrue, especially in the case of the heatedbattle between one national organization and it’s greatest detractor in Second Life.

Autism Speaks is anorganization that supports research into the causes and treatments of autism,as well as finding a cure for autism. They’ve merged several autism organizationsfrom all over the country and are heading up several projects. Some suchprojects are the Autism Genetic Resource Exchange, a DNA repository and familyregistry of genetic information, as well as the Autism Tissue Program, anetwork of researchers that studies brain tissue donated for autistic research.

Autism Speaks Doesn’t Speak For Me is an organization that believesthat autism is not negative and not necessarily a disability. They state:

We know that autism is not adisease, and we oppose any attempts to "cure" someone of an autismspectrum condition, or any attempts to make them ‘normal’ against their will.

The autism spectrum they refer to ranges fromhigh-functioning autistics (such as those with Asperger’s) to thelowest-functioning types at the other end.

Autism Speaks Doesn’t Speak For Me believes that AutismSpeaks and its supporters want to genocidally wipe out autism and anyone whohas it, as well as believing that those diagnosed with autism should be treatedin all respects—including most medical ones—no differently than ‘normal’ people.They believe that Autism Speaks’ eventual goal will be to cull the autisticpopulation until autism is non-existent.

I spoke with Gareth Ellison, former member of the SecondLife branch of Autism Speaks and present head of the Second Life chapter of AutismSpeaks Doesn’t Speak For Me and the Aspies for Freedom site, to gain alittle perspective in the matter :

Gareth Ellison: [My issue with Autism Speaks is that] the type ofresearch they are doing will inevitably result in a form of autistic genocidethrough either abortion (prenatal testing) or the possibility of a drug"treatment" which would almost certainly be pushed onto autistics – Irefer you to anti-psychotics for schizophrenia for example. 

A source from Autism Speaks who wishes to remain anonymous hastheir own understanding of the group that rallies against them:

Autism Speaks Source: [Autism Speaks Doesn’t Speak For Me] believesthat the "research" that Autism Speaks is doing is to either A) cureautism or B) research on how to prenatally test for Autism so that the mothercan abort any Autistic children. […]There is no cure for Autism, so trying tofind one is just a waste of money and time. […]The purpose of Autism Speaks is*not* to find a cure, but to help research ways to make their lives better.

The anonymous source claims that any attempts atcommunication with Ellison tend to devolve into “them comparing me to Hitler.“Ellison himself doesn’t make any effort to refute the allegations:

Gareth Ellison: […]I think that the current situation where we arebeing registered (on mandatory state registers in some parts of the US), havebeen assigned a symbol (the puzzle piece) and are being told "it’s foryour own good" by people who wish to ensure we don’t reproduce too much inthe future is hauntingly similar to the persecution of the Jews leading up tothe Holocaust.

Gareth Ellison: The secondissue [I have with Autism Speaks] is the type of propaganda they put out -they’re known for being over the top and giving parents of autistic children a"doom and gloom" message. Some of this propaganda has been linked tomurders – such as "autism every day" in which one of their directorsopenly discusses how she wanted to drive off a bridge with her daughter.

What Ellison is referring to is a documentaryabout families dealing with autism. One mother of an autistic child, when facedwith the horribly inadequate schooling situation in her area, said that afterseeing the schools she contemplated driving her and her daughter off a bridgerather than sending her there.

Gareth Ellison: Their goal is (as stated) the elimination of autismfrom the human genepool. "Prevention or cure", "a world withoutautism". That’s some of the phrases they like to use in public.

The mission statement on Autism Speaksdoesn’t actually use any of these phrases. They mention things like “bringing hope to all who deal with the hardships of thisdisorder.” Also, “Autism Speaks aims to bring the autism community together asone strong voice.” They also provide resources, financial and personal supportfor the families of autistics on their site.

As opposed to people living with a disease or ‘conditionallifestyle,’ Gareth sees autistics as a minority group no different from homosexuals.

Gareth Ellison: I see autism as quite simply a different neurologicalmakeup – and autistics as a minority group. […]If you are stigmatized and toldwho you are is wrong constantly, depression is to be expected if you can notovercome it with your own self-esteem. […]What I see constantly in the newlydiagnosed is akin to someone who’s gay and experiencing homophobia. Once youaccept that your neurological wiring (or sexuality) is alright, you becomehappy.

Autism Speaks supports a number of non-medicinal solutionsto try and lessen the potential hardships caused by autism, such as the glutenfree/casein free diet.Ellison views these solutions as “quackery”:

Gareth Ellison: Most exclusion diets seem to pose a major risk tothe person’s nutritional intake. The pattern I see is where one parent triesone with their child and sees months later some kind of developmental milestone[and] they put it down to the diet. Then other parents copy it.

In the end, Ellison’s message to Autism Speaks is a simpleone:

Gareth Ellison: Autism is not the horrendous disease you claim itto be, and you know it[…]. Please think of the lives you are affecting withyour rhetoric and please respect those with different neurologicalconfigurations from you.

Depending on where you stand, either side could be said tohave a decent point to be made. Is what Autism Speaks advocates really genocideor simply families and physicians of autistics trying to make a difference intheir lives? Perhaps the solution isn’t even truly up to us to decide. Onething is for certain, however; though the coin has two sides, this is onedebate that will likely not be decided by calling “heads” or “tails.”

36 Responses to “Does Autism Speak in SL?”

  1. Gareth Nelson

    Mar 4th, 2008

    Just a quick correction: autism speaks doesn’t speak for me isn’t an organisation, just an SL group. AFF is an organisation and I am cofounder with my wife Amy. We didn’t found the “autism speaks doesn’t speak for me” group however.

  2. Angel

    Mar 5th, 2008

    Just think.. if we had the ability to abort ASD children before they were born there would be no Microsoft or Camp Lalinda. The world would be an infinately better place. More power to them.

  3. The rest of us

    Mar 5th, 2008

    Hey asspies, guess what, without all the comforts of modern technology, you all would have died months after birth. It is a disability when you inconvenience others and make them wait on you hand and foot because you cant do jack shit for yourselves except bitch and moan and go “LOOK AT HOW SPECIAL WE ARE”

    If there’s a way to cure it and make you interact with others better, and using your body and mind to its fullest potential. Go for it.

    Just like these deaf foundations who will deny treatment to their deaf children because their “gift” will be taken away from them. yet your deaf kid and you would be dead in 2 seconds in a more brutal society.

    It’s great that some of you can make do with what you have, but when you become someone else’s burden, yes it is a disability. Any means to become self sufficient and not living in a retirement home as a ward of the state because you cant feed yourself is better than sitting around living like that. Besides, you should be remembered for what you do, not what you have.

    Also, this doesnt apply to the other “asspies” who self-diagnosed themselves as such because they’re social misfits. Yes you can help it and no you aren’t smarter because of it. In fact many self-diagnosed people are pretty stupid.

  4. Pikajedi3

    Mar 5th, 2008

    without the comforts of modern technology, we would be dead?
    I think Sir Issac Newton, he didnt live past infancy?

    we do not require a “cure”.
    to cure us, you would in effect remove our entire personality, and rewrite us from the ground up, in an attempt to…what, exactly? say i need to be “cured” in order to make anything of myself….wow, i guess that that job i have @ £37k is all in my head, and that Bill Gates fellow is a figment of my imagination, huh….

  5. erkolos

    Mar 5th, 2008

    I wonder why the moderator has approved the comment starting with “asspies”.

    While Autism Speaks do not use “World without Autism” and “Prevention and Cure” it has been used in videos and speeches. You will hear “Prevention and Cure” in Hillary Clinton’s speech supporting Autism Speaks available at YouTube and in another video from an Autism Speaks organized webside about making videos about “what kind of world would you like to live in” you will hear “World without Autism”.

    Autism Speaks is not an organisation that does much to fund help directly to families affected by autism. If you look into what they’re funding you will find that alot of it has nothing to do with it at all. Alot of research, but many begin to see this research as unnecessary. Especially genetic research as many would protest against letting the media decide the fate of autistic people as a group if there ever were to be a prenetal test. Genetic research doesn’t seem to benefit families affected by autism.

    Another charity TAAP – The Autism Acceptance Project – is willing to help autistic adults into employment and generally make the society more inclusive of autistic people. I suggest people who want to do fundraising to help people affected by autism to check it out.

  6. Gareth Nelson

    Mar 5th, 2008

    “Hey asspies, guess what, without all the comforts of modern technology, you all would have died months after birth.”

    You obviously know nothing about autism or are trolling for a reaction. If you aren’t just a troll i’d be interested to hear how you think autism is somehow fatal.

  7. anon

    Mar 5th, 2008

    it’s unlikely that a bunch of people playing dress-up and cybersex in an online game are going to really do anything one way or the other for autism research, prevention, awareness, or what have you

    so my response to this article is pretty much who cares

  8. Mel

    Mar 5th, 2008

    While the Autism Speaks group on SL may not have direct statements supporting the finding of a prenatal test or a cure, the IRL organization Autism Speaks certainly does (they recently merged with Cure Autism Now, which was the other big autism organization).

    A quote from the website under Goals: “We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism”. There is more on the quote, including a statement of “bringing hope to all who deal with the hardships of this disorder.” The latter statement I agree with. The former I do not.

    While I am what is considered “higher-functioning” in that I speak (most of the time), and I have got control of things like self-injury (most of the time), I certainly would not question that autism is a disability. Some people, whose only difficulties are with social interaction, perhaps for them there is no disability – which makes sense, since autism is a spectrum.

    I do not like it when it is equated as “the official anti-cure party line” that autism is not a disability. If it weren’t, then I would not be needing help to remember to do things like eat and drink and get dressed, and the idea of living independently next year wouldn’t be so daunting a task.

    I am autistic, and I too would not want a cure. The person calling themselve “the rest of us” is obviously so ignorant about autistics, disabled people in general, and basic human respect.

    Also a lot of times people think “Accept us as we are” means “do nothing to help the autistic person” (and BTW, you can learn how to talk and decrease/stop self-injury without becoming any less autistic). If I were advocating the latter, then I would still be banging my head when speech fails me and would never have a chance to live independently or go to college.

    I agree with many therapies, though it’s really impossible for me to say “I endorse therapies X and Y, but do not condone therapy Z.” Unless you’re talking about aversive type ABA (which is very very rarely practiced, except in places like Judge Rotenberg Center), in which case I can say I do not agree with it.

    With ABA, my only complaint would be that it’s too time consuming (40 hours per week is roughly an average of 5.7 hours per day, counting all 7 days in a week). Others, who have been in intensive behavior modification programs to teach speech and other daily skills, have expressed concern that it only teaches a surface behavior (such as speaking, but the words are not what the person wants to communicate), and that such systems are very difficult to obtain.

    I do not have much information about it, but I have read some good things about DIR (but again, I lack the personal experience or any figures).

    Regarding GF/CF diet, for autistics who have those physical issues, and an actual intolerance for gluten and/or casein, I have heard good things and neutral things from autistics, not too much bad (though it really would be bad to go on any special diet without making sure it’s nutritionally sound, such as by consulting with a doctor). I know that when I am sick in the stomach, I am generally more cranky, less likely to speak, and get sensory overload a lot quicker than usual. I can see how autistics with ongoing problems would be much more visibly autistic with those problems there than without them.

    Of course, if it didn’t seem to be helping much, then there wouldn’t be much point in continuing it. But some have had good results. Some people who promote GF/CF are quacks, but not all. And even quacks can chance upon something valid once in a while.

    I have no doubt that the people who support Autism Speaks are for the vast majority very caring, and only want what’s best for autistics and their families. I believe though that the money spent on research (almost 20 million dollars annually) would be better spent on helping autistics in the here and now. Use it for communication devices, for classrooms that provide inadequate services to autistic students, to pay for people to assist autistics unable to live independently, so that they don’t have to live in an institution.

    At present, it is often presented as a black-and-white choice: “recover them from autism, or they’ll be stuck in an institution for life”. I believe in a third way — where we provide the needed supports for autistics to live independently (not in institutions, group homes, or on the streets homeless), to provide employment opportunities for all autistics who are able to work, and awareness campaigns that provide a realistic look at the difficulties and the pleasures of life as an autistic person, or the family and friends of one.

    A person at my high school made a documentary about her autistic sister, and it showed the realities of living with someone who is autistic and who cannot speak and has trouble with other daily living skills, and it was in a positive light. That documentary made the audience connect with both the difficulties of being autistic or a family member while instilling hope for better services, which are so sorely lacking despite the great need for them.

    A film with such an attitude would be effective at raising funds for these needed services, and waking the average person up to the realities that there are people who do need these services and yet are not getting them. That’s the way to inspire action – not by showing only negatives.

    I am an autistic self-advocate in high school, and I am organizing a fund raising drive to provide informative yet not gloom-and-doom books about autism to local libraries. It’s a very small thing, but my organizational skills are poor, so I think it’s a good first step towards bigger things – another autistic advocate is in the process of establishing a non-profit organization to provide services for autistic but with a positive, no-cure-needed perspective.

    So, I think soon people will see that autistics who don’t want a cure are not all “talk” and ethical abstractions. While questions about “what it means to be normal” are all very good and fascinating, I am about to go into the world, and practical concerns must come first. I need to find out about how I’m going to go about maintaining a job (and of course, being hired). I also need to know that, if I have kids someday and at least one happens to be on the spectrum, that their rights to both services and respect will be protected – which is less than I can say about my own life.

    And I’ve had it easier than many autistics.

  9. whisper2u

    Mar 5th, 2008

    Don’t worry Rest Of Us, your pot dealer will be there soon and then everything will be ok again. Just hold on a little longer. Oh yeah, btw, this is America in the 21st century and if an aspergers syndromer wants to stay indoors and live on SL and avoid and not interact with those ugly bags of mostly water that they call “people” in RL, which includes you, then its a free country and they certainly have that right. I’m sure that you with your superior mind and body being used to their fullest potential, as demonstrated in your post above, you must realize that. And also be aware that there is a big difference between aspergers syndrome and autism. I’m not sure that your fully functioning brain realizes that.

  10. Blak Hax

    Mar 5th, 2008

    The only reason this guy is saying autism isnt a disease or disability is because niether him nor anybody he knows actually has it. They meerly diagnosed themselves online, found others who are just as annoying as them who also have these made up conditions and become activists.

    A true autistic person wouldnt even be able to use a computer…. They’d probably try to fuck it..

  11. Near

    Mar 5th, 2008

    Autism does speak in SL


  12. Gareth Nelson

    Mar 5th, 2008

    Blax – please tell that to the psychologist who diagnosed me, or to my parents who knew from the start that my development was not standard.

    I will note that Violet missed a lot out here from what she asked in the interview, for example my explanation of WHY most of the biomed treatments are quackery and my disgust at how autism speaks spend millions on genetic research while nothing is spent on helping individual autistics by them. This is a fact as can be seen from their tax returns.

    To date, I have not found any research or treatment that would help with sensory overload while not also completely crippling me (a sedative can wipe out sensory overload fast, but also of course induces drowsiness). Autism speaks has not apologised for the inflammatory rhetoric they make consistently, or even acknowledged the existence of the copycat murders following the release of “autism every day”.

    Autism every day was released on may 9th, on may 13th Katie Mccarron was murdered by her mother, in court her carers testified the mother thought that Katie’s condition was getting worse just before the murder.

    “Two young women took the stand during the last hour of the day. Both were to be full time caregivers for Katie, and both started working at the McCarron home the week before Katie’s death. Both testified McCarron conveyed to them that she thought Katie’s condition was getting worse. Both women said they thought Katie was in a much better condition than other autistic children they knew. ”

    People looking at this case like to give sympathy to the mother saying “it must have been difficult”, yet she had not been with her daughter for 20 months beforehand.

    The same article above has this:
    McCarron reenacted for the prosecution how she put the bag over her Katie’s to kill her. McCarron said she didn’t think she was killing her, but instead thought she was freeing Katie of autism. She also admitted she hated autism more than she loved her own daughter. In retrospect she testified it was quote “a sick, sick” choice. She said she had been depressed for months and had gone off her medication just a few weeks before Katie’s death. McCarron even admitted to trying to kill Katie three days before going through with it.

    So, the day after autism every day was released, the first copycat murder was attempted.

    And look at this guy:

    I quote from the independent:
    Watson and his co-discoverer Francis Crick failed to mention Franklin in their Nobel Prize acceptance speeches. But then it emerged that they had been given some of Franklin’s findings without her permission or knowledge. One of Franklin’s colleagues had shown Watson an extraordinary X-ray photograph she had taken which clearly showed the helical structure of DNA. “The instant I saw the picture my mouth fell open and my pulse began to race,” Watson admitted much later.

    But at the time Franklin went unacknowledged. Worse still, in his book The Double Helix, a gossipy account of the cracking of the code, Watson made derogatory remarks about her physical appearance, and painted her as a frigid, badly dressed and charmless bluestocking. She died four years before the Nobel Prize was awarded – from ovarian cancer at the age of just 37, possibly brought on by the constant radiation from her photography work.

    Even now Watson talks of her with a brutal frankness. “She was just awkward,” he said. “I think she was partially autistic.”

    Cure Autism Now (CAN) are one of the organisations that later merged into autism speaks, they funded a prenatal test for retts syndrome which is now used worldwide:

    The board of directors made $2.7million in total in 2006.

    The former corporate chair of the toronto branch of NAAR (National Alliance for Autism Research, who merged with Cure Autism Now into autism speaks) posting about how she withdrew her support of them following the tragic murder of Katie McCarron and started the autism acceptance project, one of the rare autism charities that has autistic board members:

    Autism speaks also threatened to sue a 14 year old autistic and bullied them into surrendering the domain name for hosting a parody site there.

    They aren’t too concerned about turning to dirty tricks to attack the competition (in this incident a local autism charity that wanted to raise funds for services rather than genetic research):

    And yes, their aim is indeed to eliminate autism from the human genepool:
    “We are walking toward a future of hope, a future of promise, and a future when autism is not a daily struggle for millions of families but a word for the history books.”

    More totally un-acknowledged murders following “autism every day”:
    After a year in which Ulysses is the sixth autistic child to be killed by a loved one, I can no longer even summon up the rage I felt after Katie’s death, after Marcus’ death, after Christopher’s death, after Ryan’s death, after William’s death. All I have left is a deep sadness and pity for these children.

    There’s a lot more abusive actions they have taken in the past

  13. SusanC

    Mar 5th, 2008

    Well, this is a good controversial topic for the Herald…

    There is an easy medical test for gluten/casein allergies, known as ELISA. They take a blood sample and mix it with some chemicals and pour over a test strip that has dots containing different allergens. If the patient’s blood contains IgG antibodies for the suspected allergen, the dot on the test strip turns blue. It costs about £100 to test for a dozen common allergens.

    It turns out that many people diagnosed with autism (or Asperger’s Syndrome, or PDD) have a reaction to wheat and/or milk.

    The test isn’t that expensive, so if you or your child have obvious allergic symptoms (e.g. feeling very, very ill 1-2 hours after eating meals containing the allergen) you might like to consider talking to your doctor about it. In the UK, GP’s are sometimes reluctant to run this test, as it costs money (although not very much money).

    But having said that:

    a) Don’t expect this to “cure” autism. A person with autism and a gluten allergy will still be autistic after eliminating gluten from their diet. They’ll feel a lot less sick, which is a big win, but may still have other problems.

    b) Some people diagnosed with autism report that they don’t have any problems with food allergies. So this won’t help everybody.

  14. Angel

    Mar 5th, 2008

    Spot an ASDer by the reams of guff they post… hmmm… does Pork have an ASD too?

  15. Just Me

    Mar 5th, 2008

    One of the hallmarks of a modern, civilized world is that the society cares for those members who cannot care for themselves. “Removal” by whatever method of those deemed unfit (autistic, deaf, crippled, etc) was done by civilizations/societies that were living on the edge of starvation and needed every hand to be able to contribute to hunting, fishing, etc.

    However, in our present world and with our resources, any condition that removes a person from the mainstream of a society or causes them to be a burden on that society should be considered a problem to be investigated and resolved via training, education, support systems, medication, or whatever other similar means can be invented or developed.

    Trying to say autism is ok is like saying that alcoholism is ok, cancer is ok, and so on. Autism is a condition that needs to be researched to discover the cause, just like anything else that ‘hurts’ society in general, be it physical or mental, a disease or a predisposition, genetic or learned … it doesn’t matter.

  16. Myst

    Mar 5th, 2008

    Erkolos said: “I wonder why the moderator has approved the comment starting with “asspies”.”

    Uh… You don’t read the Herald much do you…

    “The Rest of Us” all you did was prove you’re an ignorant asshole. Your little rant was completely valueless from both sides of the argument.

    Whisper2u… Star Trek references ftw!

  17. whisper2u

    Mar 5th, 2008

    Yeah the star trek reference of “ugly bags of mostly water” was my way of describing how an aspergers syndromer sees other people, when the interpersonal skills of instinctivly uderstanding another persons bodylanguage, moods, emotions are not there. Why should I try to concern myself with their strange and alien human mushy pursuits when I can be delighting myself by twirling Unified Field theories, and Maxwells laws of electromagnetism around beautifully in my head?

    CONSPIRACY THEORY: (grin) Ok like, here is what is REALLY going on. Aspergers Syndromers are natural engineers, coders, designers who live way way down in the details where the free electrons hit the road. As the millenium progresses and more and more of Real Life moves into the Virtural Online World, the virtual online world will become more and more like Real Life, only the Aspergers will Reign Supreme there. The Aspergers with their natural ability to network into a hive mentality will take to the virtual online world like stink on Gack and THEY will become the Dominate Society and will rule totally over the Non Aspergers / Autistics in the future.

    The trend towards Autism and Aspergers is on the rise in the current RL and its obvious that they are already starting to organize in the Virtual World. The Conspiracy Theory says that is why the government, under the guise of certain Benevolent Organizations, are uber concerned with what that will lead to with life shifting over to the virtual world and all, and have begun in earnest to find ways to fight back against the Asperger / Ausism Takeover… :)

  18. Prokofy Neva

    Mar 5th, 2008

    We see a lot of this extreme autism liberation front sort of activism in Second Life, SL is a platform that horribly amplifies it in all sorts of ways that are truly offensive — and creating a chill over the free discussion of the problem by lock-stepping people into politically-correct memes.

    I think that it definitely needs a pushback in every sort of way, as any sort of extremism that takes away others’ freedoms and creates a chill around free discussion needs a pushback. Autism lib extremists cannot have it both ways, screaming “disability” and “special preferences” out of one side of their mouths to make every critic clam up for fear of being politically incorrect — and yet then demanding forcible mainstreaming and the inconveniencing of others out of the other side of their mouths.

    If autism is a condition that has as its features things like failure to understand the nuances of interpersonal communication or inability to show empathy for other human beings, that isn’t any call to dumb down the standards of empathy and communication for all human beings and argue by back-formation for a more horrid and vicious climate on the Internet with less empathy and nuance! That’s the worst kind of levelling/Soviet-style uravnilovka out there. Next thing you’ll be hearing (and already are hearing in this thread!) is a claim that autism is Evolution’s Way of adapting mankind to the predatory and brutal Internetized and Googleized world, and it should be allowed to go forward, although of course the fallacy with that thinking is that the same liberalism and humanism called upon not to abort or restrain an autistic person will then be abandoned by these non-liberals. Democracy until they get to power, then whoops, no more votes.

    I’m also seeing a good deal of screechy entitlement-happy Internet youth culture on display here, too, to which I can only say: grow up.

    The idea that we cannot have gene studies, analysis of gene sequences, genetic counseling for couples etc so that they can plan their children is really backward, it seems to me. If you are going to be modern and liberal, which of course the autistic extremists want us to be by tolerating some of *their* antics, you have to be for the right to abortion, for a woman’s right to chose. A woman who has to face an entire lifetime of crippling of her own needs (and the needs of her partner and possibly other children!) in favour of having to care for an extremely demanding and difficult child with profound disabilities has the right to chose an abortion.

    It wouldn’t be *my* choice, as I oppose abortion personally as part of my religious belief. But I don’t think I get to impose my Catholic religious belief on society at large any more than I expect extreme liberation front autism activists to impose *their* religious belief on me and others. A person has a right to chose to terminate a pregnancy under the law if they cannot parent that child for any reason — or even, the law allows, for no reason. Kind of like the Linden TOS.

    In my lifetime, I’ve seen many autistic children and adults and had to care for them at times or had relatives and close friends who had their long-term care. Any report on this condition only from extremist Aspie activists and not from care-givers is going to be hugely biased.

    The spectrum is huge, and the outcome very variable. It would be hard to make up one policy in society about how to deal with “autism” given that “autism” these days is a blanket term that includes everything from Torley Linden to a child so disabled that he dies form his severe head-banging and self-mutilation and heedless actions despite enormous amounts of adult care surrounding him. One of the problems with extreme ideologies like this autism activism is that it does not allow for a variety of solutions to fit a variety of situations to enable freedom for all, including the person who is autistic as well as those responsible for them.

  19. DaveOner

    Mar 5th, 2008

    Yeah, having a younger brother with Autism and having gone through the huge family effort to make it so he was able to even communicate let alone not freak out when he couldn’t get rubber balls to stack I (and my brother) can assure you that it is, in fact, something that needs to be researched and cured.

    He now speaks, lives on his own and is about as “normal” as someone could be. His “autistic” tendencies have pretty much just turned into nerd habits. This was only accomplished with years of multiple types of physical and speech therapy. He was extremely lucky to get the help he got in a time when Autism was just starting to be understood (mid/late 80s). He still deals with a lot of the same problems he had as a kid but through all the learning and therapy he now has the tools to be able to handle it much better than he would have if he was born 5-10 years sooner.

    I know a lot of people out there like to convince themselves and others that they have Aspergers or whatever. Maybe it’s some “I’m a mutant being hunted” complex brought on by too many X-Men comic books, the “I like to pretend to be persecuted so I have a reason to not fit in with others” complex or a combination of the two.

    It probably also has a lot to do with modern “Medication Culture” and how there’s a disease or disorder for everything and a pill to make it go away. People like to blame their problems and inadequacies on pseudo-medical conditions that have been marketed to them by the drug companies that sell their cures. Often times they’re enabled by doctors that have bought into the system. It turns into both an excuse for their inability to function in whatever capacity and a badge they wear to make themselves feel special like the kid with a scooter that gave other kids rides in grade school.

    We see these results by this ridiculous SL group that doesn’t seem to actually have a clue as to the nature of Autism. If they don’t speak for you then great. Don’t get “cured”. How many of you have actually been accurately diagnosed anyway?

    As far as the majority of people out there that pretend to have Aspergers when you’re just a socially inept nerd…that just adds “pussy” to the list. Take responsibility for yourself and your situation. If you can’t get a real doctor with experience with Autism to diagnose you with what you think you have then you don’t really have it.

    Get over yourselves.

  20. Gareth Nelson

    Mar 5th, 2008

    “A woman who has to face an entire lifetime of crippling of her own needs (and the needs of her partner and possibly other children!) in favour of having to care for an extremely demanding and difficult child with profound disabilities has the right to chose an abortion.”
    The fallacy here is that all parents of autistics need to cripple their own needs.

  21. Gareth Nelson

    Mar 5th, 2008

    “He now speaks, lives on his own and is about as “normal” as someone could be. His “autistic” tendencies have pretty much just turned into nerd habits. This was only accomplished with years of multiple types of physical and speech therapy.”

    He can now speak having had speech therapy, that isn’t a cure for autism. That’s a therapy to assist development. You admit yourself he still has “nerd habits” – i.e autistic traits. If I hadn’t had speech therapy I wouldn’t be talking.

  22. Sir Derp Derpington of Derpica

    Mar 5th, 2008

    “Does Autism Speak in SL?”
    Who gives a fuck. Next question please.

  23. The rest of us

    Mar 5th, 2008

    whisper2u: Yeah I do make full use of my body and mind, I exercise, go out and socialize with those “useless bags of water” that you’re so jealous of, and I go to college and learn things and can actually make use of them.

    Go back to your hugbox and cybersex with someone who’s a man. after all that’s much better than associating with useless people.

    Also, what does weed have to do with the price of tea in china? Making random accusations doesnt really do anything except make you look like a retard. I’m not even sure if that was supposed to be an accusation or some sorry form of an insult.

    ps: I DO COCAAAAAAAAAAAAAAINE, not pot. get it right, fucktard.

  24. Prokofy Neva

    Mar 5th, 2008

    The fallacy here is that all parents of autistics need to cripple their own needs

    And the fallacy with *that* is that an unborn baby with disabilities and the whiny screeching adult purportedly defending them would get to decide that, and not the woman herself.

    Arguing with a character like Gareth Nelson is pointless. This is all like the difference between PETA and the Humane Socie. One is an excuse for human extremist freaks to rant and rave with their sectarian viewpoints and use even violence to change the behaviour of other people; the other is about caring for animals with kindness.

  25. Rowan Carroll

    Mar 6th, 2008

    I still don’t think that this makes right what one of the Autism Doesn’t Speak for Me people did to Laynie Link!

  26. pikajedi3

    Mar 6th, 2008

    RE: the right to abortion

    as an Autist myself, I am not opposed to the idea of abortion; rather, i feel it should be the choice of the woman in question.
    what i DO oppose is the routine abortion of people because of some percieved “Deficet”. dont think it will happen with Autism? look at Downs Syndrome. routine abortion of Downs fetuses is now the norm.

    RE:”no one you have spoken to with AS really is autistic, they just diagnosed themselves from the internet”

    see, I am a member at Gareths forums, and we have spoken in the past..
    so, all those Psychatrists et al that i was bounced around when i was 5-7, both Private and NHS….didnt exist? wow, then the men in black must have reprogrammed me and my entire family!

  27. NinaA

    Mar 6th, 2008

    The research they are against wants to eliminate the need to abort fetuses. This would be done by identifying the DEFECT in a fertilized egg well before it has developed into anything near a fetus. We are talking about a group of cells about the size of pinhead. What is the next step? Protesting that masturbation murder’s autistic babies?

  28. Jessica Holyoke

    Mar 6th, 2008

    Either way you spin it, selective pregnancy does mean you are saying some lives are worth more than others. It doesn’t matter if you do it at a zygotic, embryotic or fetal stage. There is a big controversy in India and China over sex selection during pregnancy. Saying that you should stop a pregnancy with one of these defects, downs or autism spectrum, that do not approach something like Taye-Sachs, seems inhumane.

    Having seen some of the negative aspects of people on the middle to lower function aspects of autism, how can you say that you wish that on someone? Or if therapy or a change in diet can help a person be able to interact with the rest of society better, how is that wrong? I think when you go to the genetic level, it sounds to close to eugenics. But on the other hand, with all of the early childhood programs that can lessen the effects of Autism, some people here make the argument that it isthe same as eliminating someone’s personality.

  29. .

    Mar 6th, 2008

    “it’s unlikely that a bunch of people playing dress-up and cybersex in an online game are going to really do anything one way or the other for autism research, prevention, awareness, or what have you

    so my response to this article is pretty much who cares”

    Can someone please list all the big donation drives there’s been on SL sofar, and how much in L$ and RL $ they brought up?

    Cause I cannot be bothbered at the moment to google for it for this retard.

  30. Cherie

    Mar 8th, 2008

    The subject of the “cure” for Autism and those who want it, is on a totally person to person basis. There are LFA’s who don’t want to be “cured” and there are also Asperger’s who DO want to be “cured”.

    “We know that autism is not a disease, and we oppose any attempts to “cure” someone of an autism spectrum condition, or any attempts to make them ‘normal’ against their will.”

    CHOICE is the word that I perceive, take and emphasise from the above quote. If a “cure” for Autism is found that comes in the form of a drug or therapy (and can be administered to all Autistics regardless of age), Autistics should be given the CHOICE to take it or not. No Autistic should be strapped down in a gurney, some needle forced in their arm. No Autistic should have their right to government services taken away just because they are comfortable with the way they are – uncured.

    The prenatal test is already here. In less than ten years it will be fully licensed and available to the public, but with stipulations:

    To “cure or “not to cure” aside. ALL autistics can agree that they want understanding and social acceptance. A few years ago, people thought all Autistics were like Rainman (some people still do!).
    There’s so much misconception and ignorance out there that it’s not funny.
    Even I don’t understand everything about Autism still, but I’m learning more each day, and I know a misconception when I see one.
    Oh, but lucky for the rest of you people, then comes along all the campaigns for Autism “Awareness”. Yes, they successfully make you Autism “aware”, but they only want to make you aware of the things they WANT you to be aware about – the things that make them money.

    Some media excerpts:
    “Autistics are serial killers and psychopaths”
    “Autistics are school campus shooters”,2933,267282,00.html

    ….Well on the plus side at least no-one thinks Autistics are like Rainman anymore. On the negative side, people see these articles and think Autistics are something to fear and isolate, or worse, deserving of more ridicule. It’s happening right here in SL, in the comments on this article- “ass pies” “retards who f*** their computer”. I’m starting to doubt many people in SL have friends inworld who are admittedly on the spectrum, or if they would accept people on the spectrum as friends knowing they were. No actually, instead they find an “Autism Speaks” donation kiosk and pay it some Lindens in a lazy, but desperate attempt to convince themselves that they were supportive of people with differences all along.

    The funny thing: in SL, Autistics needn’t be ostracised and socially isolated. With the aide of text communication, Autistics can hide things like poor body language. They can hide the fact that they are non-verbal. Most of the barriers that are present in interaction with others are down (granted some of thier social anxieties may still be there). They can use SL to experience interaction in ways that are unique and advantageous to them, and more importantly non-autistics can use it to UNDERSTAND them. Communication is reciprocal. If you wanna talk to an Autistic in SL about Autism, gain insight into their minds AND you approach nicely enough, I’m sure you will get a positive response. If you’re gonna try to understand them, DO IT NOW cos it’ll be pretty hard to understand them from those pages in the history books Autism Speaks are proclaiming.
    And yes, contrary to all your misconceived beliefs, LFA’s DO use SL…quite proficiently I may add.

    Autistics don’t want a charity like Autism Speaks to fund advertisement after advertisement telling people that Autism “steals souls” “kidnaps children” and falsely makes them out to be emotionless and mindless. Some even make comparisons to animals!! Completely disregarding the fact that they’re human, just like everyone else.
    It’s just so sad that genes and brain wiring of Autistics is given more value than who Autistics are as people.

  31. jeff4Truth

    Mar 8th, 2008

    IF no one in the last 10 years had been Cured of Autism and Others of Aspergers,
    THEN that would make a difference.
    SINCE so many people have been Cured of Autism
    AFTER years if not decades being diagosed and treated at 60% or more by all the regular medicos
    AS anyone able to use a computer in the usa can easily find out in about 15 minutes,
    THEN why not HELP by TELLING

    INSTEAD, Drs (like the one in oh) who are found out to be CURING AUTISM
    ARE ARRESTED !!! (according to the news reports)

    IF you or someone you know have autism/are autistic/ or just want to be healthier,
    THEN, for now, YOU have to RESEARCH IT YOURSELF
    because the
    MEDICOS who try or do go public get shot down.

    SEE numerous books written the last 9 years by parents who are wonderfully happy at the recovery of their child after years of FRUSTRATION WITH THE SYSTEM they found relief in something SIMPLE !!!
    AND they found it from other parents, NOT medicos.

    How come, for instance, virtually ZERO AMISH HAVE AUTISM ??? (this is medically well known, see Ayoub,MD Chicago Medical Conference circa 2001?)

    Parents check with parents who have had success.
    It takes 3 days to 2 years depending on how much merc is in the brain and how well the natural substances will bind to it to let the body remove.

  32. anon

    Mar 8th, 2008

    jeff4Truth: ahahah someone drank the kool-aid

  33. Gareth Nelson

    Mar 8th, 2008

    Regarding “jeff4truth”:

    Ladies and gentleman, need I give any more evidence that the anti-vaccine crowd is nuts?

    Sorry, let me rephrase that:

    DO I need to give ANY MORE EVIDENCE that they’re all nuts!!!!!!!!!!???????!??!?

  34. Cherie

    Mar 9th, 2008

    “It takes 3 days to 2 years depending on how much merc is in the brain and how well the natural substances will bind to it to let the body remove.”

    Mercury causes Autism?
    Sorry jeff4Truth, but thats quackery no.1. Go promote it elsewhere.

  35. Larre Leborski

    Sep 6th, 2011

    Wow.. and I thought just few of us were in the middle of this battle. Everyone in the SL Autism community is.

    Just to note that there are a few new Autism groups in Second Life, including 2 that’s expanding around the outer sims of Farstone. The New World Enlightenment and its branch Masters of the Singularity, run by a person with Autism, is rapidly expanding in Glinda and Taernils Bluff.

    Our beliefs are, “Autism Speaks dosen’t speak for us”. Period.

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