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Illustration by Andrew J. Nilsen.


The protesters call themselves "autistic people." Members of the organization they're protesting call them "people with autism." While this may seem like another blip in the mostly inconsequential static of political correctness, the simple act of naming is tied up in the perception of whether autism is an epidemic disease or a developing culture.

On a sidewalk in Sacramento, the nine protesters are holding signs and handing out fliers in the path of an annual fundraising walk for Autism Speaks, the most visible autism organization in the United States. It acts as a clearinghouse for families on various subjects: daily life, bullying, legislation. It offers a way to connect. Comments on the Autism Speaks website reflect support and pride for autistic people, which explains how nationwide Walk Now for Autism Speaks events alone raised $30 million in 2011. That's not counting the millions of dollars in major gifts, the $3 million raised by Toys "R" Us, Inc., and the $300 million worth of donated advertising. The ads may be the way in which Autism Speaks is most influential — and most objectionable to the autistic protesters. Autism Speaks, founded in 2005, has influenced public discourse about autism by declaring a mission to researching the "causes, treatments and prevention" of this "disease." But if your condition is a part of your identity that you don't want cured or prevented, an organization like Autism Speaks and its supporters, however good their intentions, are going to seem, as Andy Voss, leader of the protest, says: "misguided — dangerously misguided."

Members of ASAN Sacramento hand out fliers to families walking for Autism Speaks. The walkers themselves have autistic children and friends, and ASAN hopes to convince them to support other groups
Kimberly Sandie
Members of ASAN Sacramento hand out fliers to families walking for Autism Speaks. The walkers themselves have autistic children and friends, and ASAN hopes to convince them to support other groups
Andy Voss and members of the Autistic Self Advocacy Network in Sacramento protest the annual fundraising walk for Autism Speaks. Voss and ASAN object that “Autism Speaks talks about us without us.”
Kimberly Sandie
Andy Voss and members of the Autistic Self Advocacy Network in Sacramento protest the annual fundraising walk for Autism Speaks. Voss and ASAN object that “Autism Speaks talks about us without us.”
Tracey Ricard-Barber hosts “Friends Without Benefits,” a radio show covering disabilities and veteran and elderly care.
Kelly Nicolaisen
Tracey Ricard-Barber hosts “Friends Without Benefits,” a radio show covering disabilities and veteran and elderly care.
About the disabled she says, “These people should be in our working society. ... We’re discriminating against them and we’re keeping them in poverty.”
Kelly Nicolaisen
About the disabled she says, “These people should be in our working society. ... We’re discriminating against them and we’re keeping them in poverty.”
Nick Walker is autistic and teaches aikido, which appeals to his pattern-oriented thinking and also helps him process the world.
Kelly Nicolaisen
Nick Walker is autistic and teaches aikido, which appeals to his pattern-oriented thinking and also helps him process the world.
“Autistic people have fewer sensory filters and live in a more intense world than non-autistic people,” he says.
Kelly Nicolaisen
“Autistic people have fewer sensory filters and live in a more intense world than non-autistic people,” he says.

Which is why how the autistic community refers to itself is more than just PC flap. Organizations like Autism Speaks use the term "person with autism" to reinforce the idea that underneath that condition, however debilitating, is a person who deserves to be loved and respected. That's "person-first thinking." Autistic self-advocates like the protesters, though, think "person with autism" implies that autism is something separate and bad and hopefully removable. That's why these self-advocates use the term "autistic person" — called "identity-first" thinking — connoting that autism is essential to who they are.

You can understand why a parent might bristle at the thought of their child being an "autistic person." To them, it's like calling someone a "cancer person." But, say the self-advocates, cancer can kill, while autism is a way of life.

It's worth noting that the blind and deaf cultures, like the protesters, also reject person-first thinking for marginalizing a condition that is fundamental to their community. "Cure," "disease," whether a person "is" something or "is with" something: These raise serious questions of how meaning is shaped, and it's appropriate that a group of people whose condition affects their interpersonal communication is shaping a conversation with society at large.

These are supremely tricky issues.

Certainly some of the thousands of walkers — parents and siblings and friends of people with autism — seem a bit perplexed at this small band on the sidewalk with their signs that read: "There is no 'cure' for autism. We're fine the way we are." "Autism Speaks doesn't speak for me." Or by their fliers: One says that the majority of money raised is being used for "causation and 'prevention'" rather than improving the lives of autistic people, and that there are no autistic people among Autism Speaks's leadership; the other flier, a list of autistic people murdered by family members.

The protesters, black and white, male and female, quiet, eccentric, otherwise, aren't protesting the walkers per se. They're protesting Autism Speaks, which is, in the words of one protester, "brainwashing everyone."

Up at Raley Field, the Autism Speaks gathering is festive. Young families, team T-shirts, wagons; a happy event focused on the kids who have a condition that is, despite decades of research, still mysterious. We know that there are many forms of autism caused by a variety of genetic and environmental causes. We know it can cause mental impairment, anxiety, speech problems, social disorder. It also often results in intense focus, creativity, memory, insight, high intelligence. We don't know what causes it or even, really, how to diagnose it. The latest figures have one in 88 kids being diagnosed with one form of autism or another, yet there's no sense of people resenting that an epidemic has brought them here. Polio never looked this fun. Still, for an organization whose stated goal is to cure a condition that others are proud of, well, it's going to get contentious.

Which is how groups like the Autistic Self Advocacy Network (ASAN) come about. ASAN's co-founder and president, Ari Ne'eman, an autism-rights activist in Washington, D.C., has seen how all those kids grow up and look for something else. "Autism Speaks tends to rely on bringing in younger families by stressing the idea that by donating money to them, their children can be made normal," he writes. "As parents begin to realize that their autistic children will become autistic adults, they often start to look for more disability rights-oriented organizations and solutions."

It's ASAN's Sacramento branch that gathers now in the shade of big trees overlooking the Sacramento River. They're discussing the success of the protest, what they should do differently next year, the fact that the walkers seemed more receptive than at last year's protest. No one told the protesters to jump off a cliff this year, says Voss, a 22-year-old student at California State University, Sacramento and co-founder with Zachary Miller of ASAN Sacramento. Voss was diagnosed with Asperger's at an early age, and taught himself to be social and gregarious because he knew that was the way to get along in neurotypical society.

"Neurotypicals" are the non-autistic, the cognitive majority. The others — autistic, intellectually disabled, schizophrenic, ADHD, bipolar — are part of the self-identified "neurodiversity" movement, which began coalescing in the early '90s and suggests that having a different kind of brain is a right rather than a curse. Here's Harvey Blume in a 1998 piece for the Atlantic: "With so much going on in a brain, the argument goes, the occasional bug is inevitable: hence autism and other departures from the neurological norm. ... Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?"

Off to one side, a woman in the group sits on a low wall, rocking softly and flapping her hands, a phenomenon called by the medical establishment "stimming," for self-stimulation — a term which the autistic community has by all accounts enthusiastically adopted. It's a response to the flow of sensory stimuli, either an arousing or soothing way of riding out the experience of the world. One could imagine it like wind filling a sail.

Anyone who's taken psychedelics and gone to an unmellow place will appreciate the feeling of being overwhelmed by light and noise and people unless you get the hell out of there already. This is a gross oversimplification of the autistic experience, certainly, but gets at the idea that autistic people have different sensory filters and, often, an inability to communicate their discomfort.

So one can perhaps understand why school or jobs or home-life might become an unpleasant and difficult-to-manage experience for the autistic person, and why they might be annoyed and resentful at an entire civilization as loud and blinky as a Vegas casino.

Then there's a man named Bear. Long-bearded, overall-ed, with a business card that says his name and, simply, "Math." He's got a little drum slung on a cord under his arm, and thinks we've all evolved the ability to look right through protests ("It's not even a message anymore," he says. "I think we should just carry drums"). Fliers and messages and the incantations of proper terminology don't seem to impress him much. But he has a request.

"If there's only one thing I want to see in your story," he says, "It's that we're people."


Autism is so little understood in the world at large that practically nobody's ever heard of one of its commonest forms. It's called fragile X syndrome, and while it's not well known, it is pretty well understood by science.

A disorder affecting about one in 3,600 boys and one in 5,000 girls, fragile X syndrome is responsible for about 5 percent of all autism diagnoses. Fragile X is, genetically speaking, simple enough: It's caused by a mutation on a single gene on the X chromosome. The mutation shuts down production of a protein important in the development of synapses, the 100 trillion connections between brain cells that wire and rewire themselves throughout life. How important that gene is to the development of behavior, personality, and maybe even consciousness is still being researched, but it gets into squishy philosophical territory.

What's happening inside the skull when organisms are going around and learning and storing memories and accruing experiences is basically a dialogue between the macroscopic world and the microscopic one. Experiences — learning a language, figuring out how to walk or run or do fractions, storing images and voices — all those familiar things are being encoded from one brain cell to another across the synapses, the gap, the absence where everything happens. Faces and languages and memories aren't actually stored in the brain in pictures or words, but in the patterns the neurons develop. But those neurons by themselves are no more the self than a chessboard is a chess game. The self isn't a product; it's a process.

Think of those old-timey telephone switchboards with the women in big glasses, plugs going in and out. Des Moines, you've got Cleveland on the line. The shape of an apple traces one pathway, a lullaby traces another. Special proteins hanging out in brain cells are making and breaking those connections. Into this environment comes that fragile X protein to regulate these interactions, the operator with the biggest glasses.

This protein is called the Fragile X Mental Retardation Protein, or FMRP. While it would seem by its name that the protein causes fragile X syndrome, in fact it is the absence of this important regulating protein that causes the disorder. The absence of FMRP in boys can cause mental impairment, autism, anxiety, hypersensitivity, epilepsy. It's less severe in girls, who have another X chromosome to offset these effects. Still, girls with fragile X can have learning disabilities, depression, and reproductive issues. Carriers of fragile X may not display these extreme qualities, but can be affected by physical and mental problems later in life. Anecdotally, another symptom of fragile X kids is a good, if weird, sense of humor.

In the last decade, the discovery of how this protein works has led to the development of drug treatments that may be revolutionary in that they don't just dull the unpleasant symptoms of autism, like previous drugs, but may actually help restore proper brain function, improving the ability to learn and communicate. Randi Hagerman, medical director at UC Davis' MIND Institute, has studied fragile X for three decades and is its foremost expert. She thinks FMRP may be "perhaps the most important protein for human cognition."

Down at the cellular level, FMRP controls a whole cascade of molecular interactions which work on those synaptic connections. One of these molecular receptors is linked to cognition, mood, and anxiety. A new drug restores function to this receptor.

A study just published by the MIND Institute and Chicago's Rush University, two of the top fragile X research centers in the world, concluded that kids treated with the drug, called arbaclofen, showed improvements in sociability and reductions in anxiety.

The mothers of kids who were on the drug describe a child they knew was in there, emerging more fully.

"He seems to be more aware of everything around him, good and bad," says Cari Wheeler of her 11-year-old son, Max, who's been on arbaclofen for about a year. The family lives near Madera, and they have been bringing Max to the MIND Institute since he was a baby. "He's putting sentences together and saying stuff on his own, which he wasn't doing before." Wheeler credits arbaclofen for the improvement in Max's language skills, which have made him more willful and independent.

She also notices now that he's sad sometimes, which could be a consequence of growing self-awareness from the drug, or a sign that he's expressing what was once locked inside. Either way, it highlights a kind of strange risk of developing drugs that take essentially happy people who live in their own worlds and usher them into the wider one. When asked whether she'd opt for a hypothetical magic-pill-type cure for Max, given the risk of what might be lost, Wheeler says, "I kind of look at Max and he's so innocent and so sweet that I would hate to lose those qualities. But I want him to have the most functional life."

Janet Rivera in Whittier doesn't worry that a drug will change her son Kenny into somebody else. "Kenny will be Kenny," she says.

Rivera says her 12-year-old son, who's been on arbaclofen for a few years, had behavior problems and, like Max, began talking more after starting the medication. He's still got issues with anxiety, but she looks forward to further improvements.

"It's gonna enhance him, help him learn a little bit better." she says. "It'll help him more with his life, I think."

Rivera's opinion on fragile X is typical of parents of disabled children: They see the kids as separate from the condition. She can say "I don't know if fragile X will ever be gone. I hope one day it will be," without suggesting that her son is worthless. It's person-first thinking, and it's hard to see it as other than good and decent. For Janet Rivera, like many, finding viable treatments now may mean that her child will be able to take care of himself after she's gone.

Mark Bear, the researcher at Massachusetts Institute of Technology whose discovery of the protein's function in 2003 led to the current crop of drugs, sees this one little-known type of autism potentially affecting other forms of autism. "I'll be extremely pleased if 'all' we've accomplished is helping people with fragile X," he says. "There is the hope that maybe a lot of individuals with autism may respond to treatments that are effective in fragile X."

Since there is a constellation of autisms out there with a variety of causes — combinations of genes and environments — no one drug will likely affect all kinds. But the possibilities of big changes are such that both Roche (a partner with Seaside Pharmaceuticals, which Bear co-founded) and Novartis, two of the largest pharmaceutical companies in the world, are rushing to develop these new treatments for fragile X and other forms of autism. It's potentially a very lucrative market.

This is where ASAN's Ne'eman gets nervous. Ne'eman, who was named by President Obama to the National Council on Disability, agrees with using drugs to help autistic people, but worries that genetic research is heading toward engineering autism, and by extension autistic people, out of the gene pool. "If there's one thing that America's horrid experimentation with the 20th century eugenics movement should have taught us, it's that it should always be a problem when we talk about eliminating a segment of the population," he writes. "To us, saying that autism should disappear from the world is the same as saying that autistic people should disappear from the world. The way our brains work can't be held at arm's length from ourselves."

This might seem like slippery-slope hogwash, but for a few facts. One: Prenatal testing has led to the termination of at least 50 percent and perhaps as much as 90 percent of Down Syndrome fetuses. And two: In a 2011 study in which 108 mothers of fragile X children across the country were polled about their future reproductive decisions, 77 percent said they wouldn't have any more children. With a new blood test for newborns, mothers are able to learn whether they and their child carry fragile X before any symptoms even show up, and can make those reproductive decisions earlier. So while engineering babies for hair color and tennis aptitude may be decades away (emphasis on "may"), we are shaping the human genome here, now, by omission. This is why the perception of autism is so important. Is it a disease to be scrubbed from the system? Or a valid and growing culture? If the population of the world is about 7.075 billion and one in 88 of those is autistic, that's about 80 million autistic people in the world, just less than the population of Vietnam. So if we regard the autistic culture as valid, is it an act of genocide to eliminate them from the gene pool?

In the interest of journalistic transparency, I should reveal a bias here. Like you, I might be unfamiliar with the vagaries of autism and fragile X syndrome, if not for the existence of my brother, who is fragile X, or has fragile X, depending. Three decades of hand-flapping and weird humor and apocalyptic fits and the occasional shoe thrown from a school bus window have shaped me as much as it has him. To say I am unaffected by fragile X syndrome is both true and not. I got my mother's unaffected X chromosome, and my brother got the other one, the fragile one. But we influence one another just as adjacent brain cells wire one another. The synapses are between us, so to speak. Since it was only a coin toss that separated us (it could be his byline up there), I continue to appreciate how much rides on that molecular game of chance we play as non-beings. We're all in that bright casino, really.


Just up from the cable-car turnaround at Powell Street is a radio station. It's TradioV, a newly launched station that live-streams its broadcasts on the Internet. Robert Miller, executive director of the National Fragile X Foundation (NFXF) in Walnut Creek, is waiting to go on a show about disabilities. NFXF is a sort of holistic middle ground between the families and the research organizations. It's a hub of information for fragile X families on everything from daily living skills to discovering new treatments. It pushes for new legislation. Fragile X has benefited funding-wise from the increased interest in autism over the last few decades, and while the organization is heavily involved in research, it is sensitive enough to the needs of fragile X people that ASAN works closely with it.

Miller brings to his organization a certain philosophical consideration. He's a wise and balanced guy who recognizes the peril and the promise of new drugs. These medications stand to improve lives and functionality, but what if they cause other problems? What if someone improves just enough to recognize his limitations? Miller sees a cycle-of-life aspect: Younger families tend to focus more on cures, while families with older fragile X members tend to want their loved ones to be provided for, to be supported and comfortable and have whatever version of "the best life possible" makes sense. But he supports where this line of drug inquiry is going.

"Some medications might address learning, some memory, some anxiety," he says. "So, the more the better."

The host of the show, Tracey Ricard-Barber, walks in and greets Miller. Ricard-Barber is from a fragile X family, with affected nieces and uncles and grandparents spreading all along the family tree and back into her ancestry. One scientist says that the fragile X mutation can move through a line for a hundred generations — 2,000 years. Ricard-Barber's got eight in her immediate family, including two daughters, one of whom is moderately affected. Her show, "Friends Without Benefits," only 2 months old, covers disability issues for the intellectually disabled, veterans, and the elderly. She, like a lot of parents, believes that there is promise in these new drugs; though she's never liked drugs for her daughter, she is considering arbaclofen.

There was a brief period where the family gave anti-anxiety drugs to their daughter Mikayla. "It would knock her out," Ricard-Barber says. But she's optimistic about drugs to help autistic and fragile X people combat the anxiety and depression she sees in her own daughter. She hopes new medication will help them "function better ... to allow their real personality to come out even more." But she's in favor of medication only insofar as it helps the person feel better — "not to change them, but to enhance them."

This attitude echoes something ASAN's Ne'eman says is fundamental to determining the value of any good treatment, pharmacological or otherwise: It should help the autistic person, not just subdue them so that they're easier for everybody else to deal with. Prescribing drugs that just sedate the person is, he says, oppression.

Ricard-Barber agrees: "It's to improve their quality of life. We shouldn't worry about the public too much; they need to change anyway."

She thinks society needs to work harder to find opportunities for the disabled. When her daughters were in school in Napa, where the family lives, Ricard-Barber started a program to open school stores, selling food and school supplies, designed to employ the autistic and disabled alongside their non-autistic peers, a kind of business mainstreaming that she wants to see adopted widely.

After the show, out where the cable car spins on its turntable, Miller talks about how integration brought enlightenment to race issues. He hopes mainstreaming will have the same effect. "We're all the same and we're all different," he says. To be able to hold those two truths at the same time and not have to choose one — to me that's the difference."


Perceiving things differently: For Nick Walker that is both professional mission and mental orientation. Walker is a number of things: aikido sensei at his dojo in Berkeley; doctoral student studying neurodiversity; former special ed student and teacher; autistic. He's fascinated by movement, by the interaction of moving bodies, which makes sense in the context of aikido, which is about how to "look at conflict as opportunities for grace." Using an opponent's energy to flow off and around them, to turn it against them if necessary. In his airy studio, watching him work with his students, it seems like the most evolved (or at least formidable) kind of stimming there is.

"I'm the most advanced autistic martial artist in the world, as far as I know," he says later at a café. He vetoed an earlier place because he didn't like the light and the noise, but here seems more relaxed. Underneath his calm, he is a fierce activist.

"There is no non-autistic person trapped beneath the autism just like there's no straight person trapped beneath the gay," he says. Sussing out how the narrative of autism evolves is a part of his work. He sees parallels in everything from colonial Africa to 20th-century feminism to the gay rights movement, and parallels in repression.

"If we didn't have value in hunter-gatherer society, we wouldn't still be around," he says, reflecting research that argues that the autistic mind — visual, spatial, logical — has been necessary to push the species along. From creating the perfect spear-point onward, there has been a line of unconventional thinking in the species that, some scientists say, points to the prevalence of autism throughout time.

But just how, or why, is autism still around, if it causes so many problems? How are autistic people reproducing enough to push that constellation of genes down the line? One thought is that those genes that code for autism are related to intelligence. Dr. Hagerman and others believe the fragile X protein, for one, is deeply involved in cognition. That having more of the protein makes you smarter, able to learn more efficiently. Maybe autism is a natural consequence of the evolutionary experiment in human intelligence.

Whatever the case, says Walker, autism has been a permanent feature of the species. "We're part of the gene pool," he says. "And we're part of it for a reason."

To understand one another better, it may take both activism and science to find common ground.

As Cari Wheeler says about Max, who with this new drug seems to express himself better and demonstrates emotions she never saw before, maybe it was something he'd been feeling all along, "but we would've never known it. He's kind of in our world now."

Which works both ways: Back in the café, Walker is explaining how he experiences the world. He's synaesthetic, his senses blending so that light, color, smells all blur and merge. He very much enjoyed hallucinogenic drugs. But he really enjoyed taking drugs with his neurotypical friends. "I love non-autistic people when they're on acid," he says, because they can, finally, "come and play in my world with me."

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23 comments
hector
hector

I think if a person wants help and to be able to communicate better then research away. I assume there are adults with autism spectrum disorders who wish they could communicate their ideas more fully and other who communicate differently and do quite well. I know that parenting a kid when you can't communicate with them is taxing and can break parents down, so it should be the parents right to know and if worried parents want to elect not to birth a child I don't care. I don't see a lot of people choosing this road honestly because there are just as many highly accomplish autistic people. It is a spectrum and occupational therapy has done wonders in helping kids learn to related. 

 

the think I read and latched on to here is that some autistic people can't handle loud noise and fast cars...I AM SO WITH YOU. If this is the norm I would like you all elected to city councils nationally so we can respect more people's need for peace. Every week I wake for hours nights due to 2am street sweepers, 3am sidewalk sweepers, 4am trash trucks, and overhead police in helicopters. I love living in the city, but we have gotten so loud and disrespectful in the quest for order....

dgillies1
dgillies1

Great article.  It's good to see that there is a new radio/tv show, "Friends Without Benefits,"  in San Francisco that advocates for those with autism and Fragile X.

carmenhavens
carmenhavens like.author.displayName like.author.displayName 2 Like

I love this article! For my Asperger daughter whom I am extremely proud, I feel she does NOT have a disability, rather the disability lies in the judgments of others. She was born this way, she is bright, she is articulate, she has a lot to contribute to this world but it's just going to look, sound, present, feel different than a NT (also have a NT daughter). I find support in Autism Speaks and other foundations, but I refuse to be PC about this subject. My daughter does not have a disease that needs to be eradicated. WE have a disease of judgment and lack of insight! 

andrewkilroy
andrewkilroy like.author.displayName 1 Like

Whilst I see your personal need to talk about feagile X syndrome, it's a realy small part of Autism. For most Autistics, those guys protesting A$ rallies are what the majority is like.

 

I think there's a slight failure to capture the visceral hatred Autism Speaks dumps upon us too. Person with Autism was meant as a politically correct term. But it's actually insulting. So it's not only pedantic, but the exact opposite of pedantic. Save your tongue and just call us Autistic.

Grayboy70
Grayboy70 like.author.displayName 1 Like

In my opinion this is an excellent article that captures a wide range of perspectives, in a constructive effort, that many people in the full autism community will be able to identify with.  It is rare that one finds an article like this, and very refreshing to hear a wide perspective of viewpoints in the space of one article associated with the autism spectrum.  Hopefully this article will be shared by many.

azautisticadvocate
azautisticadvocate like.author.displayName 1 Like

Dear Mr. Nilsen:You spend far too much time comparing Autism and Fragile X in your article.  While a majority of people with Fragile X are diagnosed with either a learning disability or cognitive impairment and Autism, less than 10% of Autistics are diagnosed with Fragile X syndrome.  In fact, fewer than 30% of Autistics have a known genetic disorder of any kind.That said, I appreciate the honest comparison of the points of view of the Autistic community, composed of Autistic people, and the Autism community, composed of our parents, professionals, and organizations.  It is worth mentioning, however, that only 4% of the money raised by Autism Speaks goes to family grants that may end up helping an Autistic person, one of the lowest benefts to a disabled person offered by ANY of the various disability advocacy organizations.Additionally, Autism Speaks is guilty of hate speech against Autistic people from its beginning, with co-founder Suzanne Wright quoted in Parade Magazine as saying, "We must eradicate Autism for the sake of future generations," forgetting, of course, that you cannot eradicate Autism without eradicating Autistic people.  Their advertisements include the infamous "I am Autism" campaign, which was pulled from the Autism Speaks web site after a year of protests by Autistic people and various disability advocacy organizations for its negative portrayals and spooky music.  Their "Autism Every Day" movie included footage of a mother who spoke of her thoughts of murdering herself and her Autistic daughter with her daughter in the same room, a stunt which surely should have at least brought her a stiff warning from Child Protective Services.The hate speech continues through this day, with their official blog recently quoting Autism "expert" Roy Q. Sanders, who bluntly stated, "Teaching empathy to someone with Autism/Aspergers is almost like teaching a pig to sing - it is a waste of time and annoys the pig (at least most of the time).The very idea that most Autistic people are incapable of learning empathy shows the LACK of empathy of Autism Speaks and their "professionals."  Their campaigns universally include pity language that has been renounced by every other disability advocacy organization in the United States, and portray us as severely affected, unable to communicate, and potentially violent - with the unspoken assumption that if we don't entirely meet those qualifications, we aren't really Autistic.I am an Autistic adult.  I have empathy with others, including those facing the horrible storm in the news in the North East, my former home, and I wish them the best.  I work very well with children, not only those with Autism, but those with other developmental disorders, because I have a basis for understanding where they are coming from.  I have friendships, including a boyfriend, and friends who are so close that we consider each other family.  My life is fulfilling, frequently happy, and worth living.The people at Autism Speaks as yet have no idea of the force of the wrath they have woken in the Autistic community.  Our numbers are growing, as are the numbers of parents and professionals who stand with us in telling them that their message needs to change.  Immediately.

Grayboy70
Grayboy70

 @azautisticadvocate http://www.wrongplanet.net/postt213857.html While the 4% may sound low, Autism Speaks actually funds the highest amount of family service grants of any national autism advocacy organization, per IRS form 990's that are required as public records.  Autism Speaks funds 2 million dollars while the Autism Society the oldest, and 2nd most well known national autism advocacy organization also funds 4% of their revenue as public grants, however it amounts to 145K.  The information is sourced at the link provided above.  Roy Sanders works among others on the panel of experts that review the "Parenthood" TV show for NBC.  He is one of many people that have contributed to Autism Speaks blog, but his opinions do not represent those of the Autism Speaks organization, nor do the opinions of many others contributing on the Autism Speaks Blog.  While I agree his teaching a pig to sing analogy provided on that blog in 2011 was a poor one that is perceived by some as very offensive, Alexithymia is a co-morbid condition prevalent in 85% of individuals on the spectrum.  Alexithymia can be associated with severe problems with empathy. Some people on the spectrum have high levels of empathy but some do have difficulties with issues associated with Alexithymia and empathy.  en.wikipedia.org/wiki/alexithymia

azautisticadvocate
azautisticadvocate like.author.displayName 1 Like

 @Grayboy70 4% is VERY low for the amount of money going to assist the people who are supposed to be targeted for help.      As for Alexithymia, I have some of it myself.  It limits the ability to put LABELS on emotions, not the ability to actually FEEL the emotions.  I have difficulty saying which emotions I feel, and the emotions others feel, but it does not limit my ability to feel them with people.  I know many other people with Alexithymia who have the same experience.        As for printing the opinions of others, if they do not represent your organization, why would you print those opinions on an official ANYTHING?      Autism Speaks remains offensive to both people on the spectrum and those of our parents who are well enough informed to realize that they are being fed a line of nonsense, at best.

Grayboy70
Grayboy70

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

azautisticadvocate
azautisticadvocate

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

Grayboy70
Grayboy70

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

azautisticadvocate
azautisticadvocate

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

Grayboy70
Grayboy70

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

azautisticadvocate
azautisticadvocate

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

Grayboy70
Grayboy70

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

azautisticadvocate
azautisticadvocate

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

Grayboy70
Grayboy70

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

azautisticadvocate
azautisticadvocate

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

Grayboy70
Grayboy70

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

 
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