Autism: The Question of Cure

See also:    Autism: Positive Perspectives   

to be nobody but yourself in a world that is doing its best to make you everyone else is to fight the hardest battle that anyone can fight

e.e. cummings









Internet Resources

The argument dividing the autism community regarding the need to cure autism as opposed to accepting autistic people as a natural expression of diversity has been on my mind a lot lately. The possibility that I could be very autistic for the rest of my life always upsets me. Therefore, when people talk about a cure I actually love to hear it. To be realistic, I know I will never be cured. The cause of my autism is a genetic anomaly and can't be changed.
Sue Rubin
First off, I do not regard myself as disabled in any way. I'm very much aware of the cognitive differences between myself and the majority - I've been coping with them for as long as I can remember - and I see no evidence of disability on my part at all. I shall speak plainly about how things look from my point of view in what follows. I think this is only fair, since some others are so forward as to call me a disease, and assert that I must be "cured" - i.e. exterminated - and expect to be applauded for this.
Alan G. Carter, Dan Olmsted, UPI
After working with me for over three years, my parents achieved what the experts had deemed 'impossible': my complete recovery from autism with no trace of my former condition.
Raun Kaufman. Option Institute
In my 16 years of pediatric practice, I have seen many children with autism improve. Some, like Humza, go from being nonverbal to fully mainstreamed. Others improve, although not to that extent. The kids who have the greatest improvement received early intervention, but only a minority received the extent of "biomedical therapies" pursued by this family. Are any of them cured? No. They still fall on the autistic spectrum, although they may now meet criteria for a less severe form, such as pervasive developmental disorder, not otherwise specified, or Asperger's syndrome.
San Francisco Chronicle
Most children diagnosed with autism at 2 years of age will still have that diagnosis at age 9, investigators report. In contrast, many young children first diagnosed with pervasive developmental disorder not otherwise specified (PDD-NOS) or with autism spectrum disorder (ASD) later have their diagnoses changed to autism. Dr. Catherine Lord, from the University of Michigan Autism and Communication Disorders Center in Ann Arbor, and her associates report that clinicians have been questioning the stability of these diagnoses, with clinical studies yielding divergent outcomes.
Reuters, Medscape
As a parent, I understand the source of any possible despair that a child may not be "normal." Imagine the despair of the parents of Einstein, Freud, Yeats, Bertrand Russell, Wittgenstein, and Turing. These intellectual giants of the 20th century were all high functioning autistics. In all likelihood, their parents no doubt found many of their childhood behaviours to be unusual but fortunately for humanity, they were no subjected to intensive behavioural modification techniques to "cure" them of any symptoms of autism.
Corey Vermey
It might be time for all of us to start thinking about a few things. [1] Why are autistic people being shut out of organizations that supposedly exist solely to help people with autism? [2] What are the implications for autistic people of calling autism a "holocaust", a "blight on society" and a "catastrophe"? [3] Is it acceptable or ethical to "cure" people of a different way of thinking? [4] Is it acceptable or ethical to refuse to "cure" or treat a condition that is a profound disability in some people because other people find it is a different way of thinking? (This assumes - without data to support the assumption - that the two conditions are, in fact, the same. They may not be.)
Prometheus
"I love the way my brain works, I always have and it's one of the things I can now admit to myself. I like the way I think in terms of numbers. I like the way I visualize things. I like the way most especially that I can bury myself in work that I love to a degree that makes everybody else in the world looks at me and go, 'God! I wish I could do that.' No, I am not changing anything."
Joseph Shapiro, National Public Radio
I've spoken to a lot of autistics both in person and online and I can honestly say I have never met any who wish to be 'cured'. The wish for a cure seems to be the sole province of non-autistics.
Kevin Leitch
To cure what? Good question. Some believe that autism and its attendant comorbidities are interchangeable. That constipation and a different way of looking at things are the same thing. That dyspraxia and a lack of imaginative ability are the same thing. Others believe that the two things are quite separate. That the comorbidities that are attendant with autism in some people cannot be used to define autism. That the condition of being autistic bequeaths gifts as well as troubles (and it does bequeath troubles, lets not pretend it doesn't) and that keeping the troubles is a small price to pay for keeping the gifts.
Kevin Leitch
Although a major characteristic of autism is the need for sameness, a day does not go by that Nikki does not do or say something new that makes us stop and think about how special her perspective on her surroundings is. She's a little girl who loves Christmas but couldn't care less about gifts. It's the lights, the decorations and the warmth that she feels in the house that make her so happy. One year it took until June for her to open the last of her Christmas presents. As a family, we have chosen to appreciate that gift and live our lives, thankful every day for an autistic child to be part of our lives. We have made the conscious decision that we would not let autism slow us down, but rather allow it to make the ride of life more rewarding.
Chris Collins, Asbury Park Press
The autistic community firmly believes that autism is not a disorder but a natural human variation. We are deeply concerned with the perception of autism as a disorder and the attempts to cure and prevent autism. In addition, we are concerned about attempts to help autistic people that actually harm them. The purpose of this website is to educate the public about the anti-cure perpective.
Assertions that autism can and must be "cured" create unrealistic expectations, promote the exploitation of parents made desperate by dire predictions, and perpetuate a climate of negative judgment towards children and adults who are not or do not strive to become "indistinguishable from their peers..."
Kathleen Seidel, neurodiversity.com
Their move mirrors that of some campaigners for the deaf who recently complained about 'oralist' attitudes that victimise deaf people. Paddy Ladd, the deaf writer and campaigner expressed frustration in his 2002 book Understanding Deaf Culture that deaf people were treated not as a 'linguistic minority' but as group of people needing to be 'cured'.
David Harrison, Tony Freinburg
People with autistic spectrum disorders are not victims of autism, they are victims of society. They do not suffer from their developmental differences, they suffer from prejudice, ignorance, lack of understanding, exploitation, verbal abuse - all this and more from that sector of society which considers itself socially able.
Grace Hewson
What brought on this miraculous 'recovery' from autism you may ask? Chelation therapy? Gold Salts? Lupron, ABA? It's possible, the article describes some of the various therapies he received over the years... No mention of any biomedical or alternative type medical interventions but we can't know for sure that his parents didn't do something to remove mercury from his brain. One thing that seems to have helped Wesley eventually lose his diagnosis, other than the forward march of time that is; Martial Arts.
NotMercury
There are a limited number of things that could go wrong to cause autism. It could be brain damage, it could be the gastro-intestinal system, it could be some hormonal imbalance, it could be something genetic and it might be something immune related. (WARNING: This website contains anti-Semitic material.)
Lenny Schafer
Founded by parents, doctors, and researchers, dedicated to promoting biomedical and genetic research to find a cure for autism.
I do not wish to be 'cured' from my autism, and many autistic persons who are able to communicate their feelings, say the same thing. Autism is not something that I have, it is something that I am. Autism is not a cage, with us as the prisoners.
The future for any parent is frightening. What will become of my child? Will they be happy? The future for the parent of a disabled child is terrifying sometimes.
Kevin Leitch
There is an assumption most people make that autism is something akin to an illness i.e. that it is something that should be cureable at some point. This isn't so. Autism is a condition or syndrome and as such there is no cure. Someone who is autistic will always be autistic. This is one of the things that is most difficult to accept for parents whose kids have just been diagnosed as on the spectrum but accept it they must. Once you do accept it you become aware of the uniqueness of your child and appreciate the autism that makes them approach life in such a different way. If you cannot accept it then you are doomed to an unhappy life of 'what ifs'.
Kevin Leitch
What is it you think you are curing? If your child doesn't smear, or headbutt or have constipation – does that mean they are not autistic? No. It means they're not constipated or headbutting or smearing anymore. If thats your child then I offer you my sincere congratulations. I don't want your child to be in pain any more than I want my child in pain. But I would urge you to be very careful – your child almost certainly still thinks and interacts in ways that are very different than you do. Would that be enough justification for you to carry on 'curing'? If so, why?
Kevin Leitch
The kind of despair that sets in when you realize you're not good enough to be let around running loose is pretty serious, especially when other options don't even register as possible. I can't imagine these attitudes are useful or sensitive to much of anyone, least of all people who are living like I did when I realized simultaneously that I would never be cured and what that meant in the worldview I'd been raised within.
Ballastexistenz
I do want him to learn how to understand and interact with and work together with other kinds of mind, other kinds of ego, other kinds of affect, and to do so while holding high the value of his own kinds, however small a minority they may be in.
Phil Schwarz
Are you sitting in another Internet flamewar on the subject of cure, wondering whether you just want to give up trying to prove you're a worthwhile person as you are? Tired of sitting through long-winded speeches on how horrible autism is and how much it needs to be eradicated? Generally bored with and depressed by these discussions, but unable to get out of them for some reason? Increasingly frustrated by your inability to come up with words in response to illogical but highly disturbing replies about how autism needs to be destroyed? If you come from a strongly anti-cure perspective with regards to autism and need a way to pass your time in these situations, then Curebie Bingo may be for you.
Amanda Baggs
The defining characteristic of a curebie is a fanatical desperation to destroy a child's autistic traits in their entirety. Autism takes on a separate and distinct identity in the curebie mind; it is personified as a demonic foe that must be defeated at all costs. The child ceases to be seen as a sentient person and instead is treated as if he were a battleground for a cosmic struggle between good and evil.
ABfH
The primary responsibilities of parenthood is to keep a child safe, and to teach them how to keep themselves safe when you are not longer there to care for them. I see Autism as a making the first much more difficult and a monumental obstacle to the achieving the second. I am not so much attacking the "desire not to cure", as using this example to defend the "desire to cure".
Ginger Taylor
The talk of autism as if it were a disease is in itself problematic; diseases are bad, after all, and as long as it is seen as such, the need for a cure will always be on people's minds.
Frank Klein
Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person.
Jim Sinclair
The current research points to autism being central to one's personality, something that I and many like me tend to agree with. Removing something that fundamental would leave little of my original self. Many of the traits I identify with most strongly are those labeled autistic, such as the ability to hyperfocus, a strong attention to detail, the ability to enjoy my own company for long periods, not being controlled by the social collective, etc.
elmindreda
Having children who are "different" is an unexpected experience, a positive one, and I keep trying to figure out how to impart a message of experience to others who have never had the challenge, and ergo, the ultimate benefit of one... Organizations that seek to fund this “difficult and mysterious disorder,” to "cure it," as a war waged against the autistic population, instead of listening to them, may become baffled at the ability of autism, despite its superficial dysfunctions. It is finding itself at an intellectual and philosophical divide with those they are seeking to cure. Parents are baffled, or angry. Afterall, aren't they just good people trying to help others? Shouldn't parents who struggle day in and day out, whose expectations have been taken from them, have pity bestowed upon them? I say no. I say that as difficult as it is for many families, who experience a "spectrum" of challenges, this is life's test. "The best thing about the future," said Abraham Lincoln, "is that it comes one day at a time." We have time to reframe our expectations and to find joy in autism.
Estee Klar
The idea that a person could be just different, not fit into any of the hierarchical pigeonholes, is apparently too alien to even consider.
Jessadriel Darkmountain
In all people on the Autistic Spectrum... there are things which do not need treatment or cure (but) there are things in some people which are often called a part of that person's Autism, where it would be inhumane to withold treatment or cure.
Donna Williams
So, am I in favour of a cure? I don't think that something that people are not SUFFERING from needs a cure. I think many people with AS are looking for support, and that is different to a cure, of course.
Simon Baron-Cohen
To the surprise of many people, and the dismay of some computer professionals, the formerly derogatory labels geek and nerd are now being used with pride--or at least resignation--by a growing number of young computer experts.
Gary Chapman
The real enemy is mental retardation. Mental retardation has made many otherwise normal people dependent, and the same is true of autistics. It is the mental retardation that makes low-functioning autistics dependent and helpless.
Frank Klein
You want to know how many research validated treatments there are for autism? Do you want to know how many treatments are considered well established empirically validated? I'll tell you how many: NONE. How about "Probably efficacious?" NONE... When someone says they have a cure, a research validated treatment or a promise of recovery from autism, they are telling a LIE. They are no better than the merchants of terror who institutionalized (and molested) autistic children because of "refrigerator mothers."
Dick
I have said for a long time that not only is the idea of a unified functioning level misleading, but that perceived 'functioning level' is not as far as I have seen related to whether a person wishes to become non-autistic or not. But I was talking to another autistic person the other day, and I noticed something that runs the opposite of conventional wisdom on this matter: The people I have seen who detest their autism the most, are often (not always of course) people who can almost fake normalcy, but not quite. People who can appear almost as if they are not autistic, almost make it in the non-autistic world, almost 'succeed' in life.
Ballastexistenz
Give me a ranting bigot's blog, where it's obvious to everyone just what it is, rather than the insidious poison served up by pity-party campaigns like the Autism Society of America's exploitative Getting the Word Out site (gettingthewordout.org) with its images of disability that consist of gross, prejudiced stereotypes and its propaganda so grimly reminiscent of white supremacist slogans.
ABfH
...a view of autism as an alternative form of brain wiring, with its own benefits and drawbacks, rather than a devastating disorder in need of curing.
Amy Harmon, New York Times
The business of the cognitive elite is to help people fit into society on the basis of their proper place in the I.Q. hierarchy…
I think... That if I see one more autistic person... Describing someone like me... Or like my friends... And then making an exception to their anti-cure stance... On the basis that they are just too "high-functioning" to understand the horrible imprisonment that is supposedly our lives... ...any community that does this hierarchy crap ...whether to claim sensitivity while really reinforcing standard prejudices about autism... ...or to save their own skin... ...isn't my community.
Ballastexistenz
Autism is currently identified solely by its dysfunctionality (see the diagnostic criteriai). This focus on what is wrong means that autistic strengths are systematically ignored. This essay does not deny that autism can be hard to live with, but it focuses on the benefits of the autistic disposition rather than the problems it may cause all concerned. The emphasis on dysfunction and the label of illness have primed public expectations of “a cure”. The idea that this is a fundamental misunderstanding of autism underpins this essay.
Dinah Murray
The purveyors of the epidemic rhetoric want you to believe that those inhabiting the fringes of Asperger's Syndrome and the most severely affected autistics pose the same economic and social burden on society and their families. The autistic spectrum is a broad one. As its denizens like to point out, Rainman is no more representative than Spielberg. A question arises with this pervasive 1:166 rhetoric. Widely promoted by autism societies and the parents of autistic children, do they not care that in painting the spectrum as a devastating tsunami, a fate worse than death, a pestilence and so forth, the general public is getting a very negative view of the autistic spectrum and one guaranteed to have a deleterious effect on their autistic children's future?
Alyric
We are not a plague. We are people who have a culture: a large published literature, art, music, architecture, design, technology, science, and engineering.
Michelle Dawson
One of the most exciting things we can do is help autistic people and non-autistic people learn to understand each other, and find ways to work together in an atmosphere of mutual respect.
Jim Sinclair
Many people with autism have an ability to focus on detail and may have good powers of concentration on a single activity provided it is of interest to them. This means they can often achieve a very high level of skill in a particular area.
I'm married with 2 kids (soon to be 3 in June). My middle child, Megan is classically autistic (Kanners autism) and so the blog serves a dual purpose. Firstly it allows me to voice my thoughts on autism in general (we're anti-cure, pro-intervention in my family) and how Megan is developing in particular. My greatest wish for all my kids is that they grow up to be happy with a strong sense of who they are hence we believe it is society who must change to accomodate autism in the same way that society has changed to frown upon homophobia, racism and sexism. All it takes is a little bit of curiosity and a little less assumption and we can start to see autism less as a problem to solve and more of a difference to include.
Kevin Leitch
Mr Schafer has made his position clear. He will do anything to further his aims. This includes deliberate attempts to mould the facts to meet his version of the truth and misrepresenting an entire group of people. Speaking as the parent of an autistic child diagnosed with severe classic Kanners autism I say for the record that I neither trust him nor appreciate his attempts at wilful misleading of parents.
Kevin Leitch
I've never heard any autistic speak of autism as innocuous. A simple look at sites such as autistics.org reveal people who suffer greatly with some of their comorbid conditions or whos autism has led them through struggles that would reduce Mr Schafer to well, maybe appreciate their view a little more? Yet, they refuse to be defined by their struggles and wish to be proud of who they are. They don't wish to make other autistics feel better by redefining it as innocuous, they wish to make other autistics feel better by standing up and being heard in the face of what is becoming an increasingly desperate and deliberate demonisation and belittling by people who know they are losing the argument.
Kevin Leitch
Don't let this be your child. Love him without expectations and conditions. I beg you not to teach him to pretend to be someone he is not. It's just too dangerous.
Patti Shepard
...with unconditional LOVE (Elizabeth) ... is provided with a safe and LOVING environment... in which she can at one point be comfortable enough in to make the choice that she doesn't want to be autistic anymore because it's up to her!
Peter Durian
Learn from autistic people. Learn to love us as unique beings, not as damaged or defective versions of yourselves. Learn to be devoted to us, instead of being devoted against us. Learn that being devoted against autism is to be devoted against us.
Amanda Baggs
MIND = Medical Investigation of Neurodevelopmental Disorders. Secretin Study, Neuroimaging of Neurodevelopmental Disorders Study, Social Skills Training Program for High Functioning Autism, AS, or PDD-NOS.
Since Chas was two, Gardner has dreamed of a sort of Manhattan Project for autism. He wanted to create a center that would cure the disorder -- quickly. And he wanted parents to be involved in running it.
National Public Radio
Nobody is meant to go through this life unscathed, free of anything that is unpleasant. Parents, if you are addicted to the quest for a cure for autism, I ask you this: What reality are you running away from? Is it the reality that there is no perfect child and no perfect family? Is it the possibility that your child's autism was inherited from you? Are either of these realities really so bad after all?
Lisa Jean Collins
The only sort of autism awareness that I want to see from the media is an awareness that they are talking about human beings. But it looks as if I'll have to wait a long time before I see any of that.
Meg
All people are real, in the deepest sense of that word. That means that there is no such thing as a non-human human. But if you look around this room, you will see people who look at least non-standard. And that is where the problem begins. We live in a country where image is kind of a reality more real than reality. My main answer to that is: I don't need surgery to make me real any more than a beautiful woman "really" needs her eyelids sewn back. The fact that I think I do and she thinks she does is more fairy tale than real. Eagerness to be like others didn't make Pinocchio real -- it turned him into a donkey! And eagerness by parents to cure autism or retardation or compulsiveness will not drive great distances toward the final solution to the actual problem. Because the person who believes "I will be real when I am normal," will always be almost a person, but will never make it all the way.
Eugene Marcus
Autism Speaks did wrong. NAAR and Autism Speaks continue to do wrong because they continue to exclude the autistic population from its mandate and research. This is why, as former corporate chair of NAAR Toronto, I withdrew my support and sponsorship. Any organization that uses language against the desires of a culture, race, or type of people who have identified themselves as a culture, is immoral. We have learned to be careful about semantics where race and religion are concerned. Why is there so much problem in understanding the inhumanitarian treatment against the autistic?
Estee Klar
In her essay "My Name is Autism," Marty Murphy, a 41 year-old "high functioning" autistic woman describes what autism means to her... We find these statements to be dangerous, sensationalist and false. We believe these statements demean and devalue the lives of all autistics. These statements resonate with similar historical efforts to incite fear and hatred against identifiable groups of people, with the goal of restricting then eliminating the existence of these people.
Janet Norman-Bain
To this end, coming out of this most basic difference in social ability and social connectedness or defined disconnectedness it is my hope that the system and parents of children with AS will stop believing and insisting on trying to normalize the autism/asperger's out of their children. We are born the way we are for good reason.
A.J. Mahari
As expected, not everyone sees the joy in autism, at least not immediately. Many find autism a challenge and the joy of autism, elusive. Yet, there is a tie that binds all parents, those of us who want services, education, and opportunities for our children. There is little difference between the devotion many of us feel towards our children, the daily commitment toward them in ensuring their success.
Estee Klar
The protest was held to show that many of those with autism do not wish to find a cure, believing that acceptance is more important. There are advantages to have a neurological difference, and this neurodiversity can be welcomed and appreciated.
On Sunday October 24, 2004, I protested the NAAR walk here on Long Island. I was nervous. I am fairly sure I was the first person with aspegers to challenge their beliefs openly. They all see themselves as the autistic community. We are the *REAL* autistic community and it is time to set the record straight.
Aspies for Freedom
I think that *genuine* acceptance of someone for who they are is incompatible with seeking a "cure" which will somehow "transform" them into someone else with "no trace of [their] original condition".
Autistic and Proud
People with Asperger's Syndrome (AS) live outside the box of the “whole group”, or society in general. This is seen, viewed, and defined by most as being “less than” and/or dysfunctional. When, in truth, what this really means is that those with AS are living lives that are of a different nature than those who are neuro-typical (NT).
A.J. Mahari
Autism Research Institute
If they look recovered, if they act recovered, and if they are thought to be recovered, they are recovered. Perhaps some of these "recovered" individuals may have some quirks and odd behaviors. If so, so what? Who doesn't?
Bernard Rimland
Yes, aiming for and achieving recovery from autism is expensive. So is chemotherapy. So is a lifetime of state-supported custodial care. Why would we not attempt to recover anyone from cancer, or autism?
Catherine Maurice
The hype, marketing, and hypocrisy of Cure Autism Now and Soma Mukhopadhyay is destructive and sickening.
Amanda Baggs
Ginger Taylor
...desperation, tremendous guilt on the part of parents "when there's something wrong with their child that they can't fix." But there's another factor at work, too: widespread, unreasonable assumptions about what therapy should be and can do.
Carol Lynn Mithers, Los Angeles Times
PLEASE don't try to make us 'normal'. We'd much rather be functional. It's hard to be functional when you have to spend all your time and energy focusing on making eye contact and not tapping your feet...
Jennifer McIlwee Myers, Aspie-at-Large
To a humble biologist, like myself, the idea of "a cure for autism" is as simplistic as "a cure for cancer." This isn't because I think that either autism or cancer are necessarily "incurable", it's just that both ideas demonstrate a serious lack of knowledge. The "cure" part isn't the problem - it's the "a" part.
Prometheus
This autism verses Aspergers debate is no longer a parlor game of pin-the-label-on-the-dorky. Serious harm has been done and those who give aid and comfort to the impostors are misguided and ought to be ashamed for the harm they are helping to inflict.
Lenny Schafer
Mad scientists are working around the clock to discover the cure for normality, a serious and persistent chronic mental illness afflicting much of the general population.
Janet Foner
If you could change a person enough for them not to have Asperger syndrome anymore then you would have just changed them into being a different person.
Suz
It would be as pointless, bizarre, or even cruel depending on the severity and persistence of the attempt, to try and change a Chihuahua into a St. Bernard. But what is happening to autistic humans all around the world? The world is trying to change autistic humans into nonautistic humans, and the next step is to make sure that autism never again sullies the gene pool of the human race as it is understood by nonautistic humans. It is not enough for autistic humans to be doing what autistic humans do, and it is not enough for them to be happy doing it, either. No. They must not be who and what they are. If they do not conform to the satisfaction of some families or society as a whole, many forms of societal retaliation can take place, from bullying to segregation to forced drugging to institutionalization.
Lisa Jean Collins
Discusses abusive treatment and some of its results.
Amanda Baggs
Let's be honest here, in spite of all of the anecdotes claiming miraculous recoveries, no one has cured their kids of autism. The most we hear about is how much a child has improved after years of taking this thing or another. Even the most visible advocates for chelation therapy have been at it a very long time and their kids are still very much autistic, though not for lack of trying.
Not Mercuiry
Let's stop this silly and harmful practice of treating autism like a behavioral disorder rather than a neurological difference. Like it or not, autism is permanent, despite what some parents, teachers, and even some 'former' autistics will tell you.
Frank Klein
It may be that autistic people are essentially different from "normal" people, and it is precisely those differences that make them invaluable to the ongoing evolution of the human race.
Donna Rosinski
No reasonable person in today's society would suggest that racial minorities ought to be cured of their skin color or their hair texture. And yet, when the genetic traits of a minority group include a neurological configuration that differs from the majority population to any noticeable extent, society's tolerance for diversity goes out the window. The Internet and the mass media are filled with profoundly negative and inaccurate stereotypes about the Aspergian population.
I am autistic. I've always been autistic, and I always will be autistic. Autism is part of who I am, just as my sense of humor and my emotions are part of me. I like who I am, even my autistic part. You see, autism isn't an awful condition. I'm not condemned to an "un-natural life." Yet, I have lived a life with pain, fear, and confusion. Pain because of your cold heart. Fear because of my past, and because of my future in a your world, which can't tolerate uniqueness. Confusion because of my ways of interpreting your world and because of the deceit, lies, and apathy in it.
Joel Smith

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