Half a Million Kids in the US Have Autism

Simon Lynch, the autistic child Bruce Willis is protecting in Mercury Rising has a special talent, which puts him in danger when he innocently breaks the “unbreakable” National Security Agency code.   Raymond, Justin Hoffmann’s autistic character in Rain Man has amazing memory and outstanding mathematical capabilities.  These two are likely the first two characters most of us think of when hearing the word autism.

The two film characters are not typical though: they are autistic savants, having developmental problems combined with extraordinary mental abilities in a particular area.  They represent a small fraction; most children with autism don’t excel any any particular area, they are average, normal kids – but they lack the ability to interact, socialize, communicate.


Quinn, the adorable boy in the video  above writes a lot. His parents did not teach him, they just caught him writing out the full credits of films he saw.  He is a Read/Write kid – but he lacks verbal communication, as most children with autism do.  They tend to focus a lot on a narrow area of interest, often mechanical, moving things, have a good memory for visual patterns, and prefer predictability, regular patterns.    

Siddhu likes to draw … a lot.   His favorite objects are cars, and anything that have to do with cars – mostly keys.  When he was 3, he often got obsessed with precisely drawing car keys repeatedly for hours, until he got it right.  Yet his communication skills were close to non-existent. Some of the “normal” things we take for granted are a major milestone for autistic kids – just look at this breakthrough in Siddhu’s life, told by his father: 

“Today my son achieved a breakthrough. Usually I get him ready for school in the morning. After I seat him in the school bus, I come out and wave. He would just stare at me through the window. Today, he smiled and waved back – something that he hasn’t done before.

Recovering from autism is a series of these successes. What appears so natural that we overlook it in a normal child is Herculean effort for these kids. I am happy he made this breakthrough today. “

Quinn’s Mom is an 80’s music fan – she and I must be of the same generation.  In the 80’s when she was chasing her favorite bands to pose with, 1 out of every 100,000 children were diagnosed with autism.  By the time she gave birth to Quinn, that ratio was 1:160, and for boys it’s 1:100.  Yes, it means 1% of every boy born today will have autism. That’s a significant ratio,  and an alarming rate of increase since the 80’s.  At this rate sooner or later we’ll all know someone with an autistic child.

Until yesterday my ignorance put me in the camp whose understanding was limited to Rain Main and the “Bruce Willis kid” – now I’ve spent hours reading up on the subject, and I don’t regret it.   What prompted me to do a little “research” (I’m hesitant to call it such; half a day into this is nothing compared to the ongoing research that becomes a lifestyle for parents involved)  was an article by Robert Scoble. Having finished an interview with Adventnet (better known for their Zoho brand) CEO Sridhar Vembu, they “got personal”, and as often the case, the really interesting discussion came up off-camera.   Now Robert has a better understanding why Sridhar isn’t worried about Google or Microsoft when he wakes up at night.. his got bigger things to worry about:

“Dealing with autism has brought a different perspective in life: almost everything looks like a small challenge compared to this. Having him speak fluently is the equivalent of winning the Nobel Prize for me and my wife.”

Sridhar and his wife are taking a very active approach to treating their son.  Behavioral treatment is the established course for autism; however, Siddhu’s parents subscribe to the theory that vaccinations, and particularly mercury contamination may be the cause, and they took their son to several courses of biochemical treatments.

The following to videos from NBC talk about the mercury-theory and an aggressive type of treatment, chelation.



Chelation, and mercury-contamination as primary cause are highly controversial – however, some parents clearly feel they don’t have other choices left.  If treatment can be be successful at all, it has better chances at early stages, so they feel they don’t have the luxury of waiting for the medical establishment to clear the way. (Talk about “luxury”, not all families can afford these treatments, some costing $50K and more).

The Scoble article sparked a heated debate amongst commenters – mostly parents of kids with autism.   The dispute around the merits of biomedical treatments, vaccination as a cause are not surprising – but I am seeing another battle-line drawn, between those who are seeking to cure autism, and those who reject a “cure”, since autism is not a disease, not a developmental disorder… it’s just the way some people are, and that’s all right. 

Adam is 5 years old, and has autism.  Her Mom is doing everything she can to give him a full, happy life, and as she blogs in Joy Is Not An Outcome, he can’t spend his life maximizing therapy, struggling to become “normal”.  He needs to be a happy boy, today and every day. This is what his Mom wrote on his 5th birthday:

“Today, on his 5th birthday, I do not mourn the child I do not have, I celebrate the Adam I do have, to whom I responsible, and to whom I owe a great amount of fortitude and joy. His life is full of possibilities, and he will never disappoint me.”

I think it’s a very respectable approach. Joy today, joy with Adam yes… “Joy of Autism”, as the blog’s title says …well, I’m not sure. If there was a choice to live life without autism, I’m sure that’s what Adam’s parents would prefer. But they don’t have that choice, and are making the best of the situation they are in.

The next video is rather disturbing difficult to watch, but if you watch it all the way, you gain insight to the very coherent and logical arguments  of  an autistic adult making the point that she sings, talks, listens, feels … in fact she is communicating – in her own language.


“It is only when I type something in your language that you refer to me as having communication”

She is right  – but communication is a two-way street, and  the brutal reality is that the world, the rest of us won’t learn her language.. so she is missing something. 

I’m struggling to put this into words, as I don’t want to hurt anyone’s feelings, but the point I’m trying to make is this: while it’s everyone’s right to select their approach to autism, and for many acceptance is the right one, denial does not help – after all, if you could eradicate autism overnight, you’d probably do it, so let other people pursue this option… they are not doing it to hurt you.  Here’s a comment from Robert’s blog:

You’re not “spreading the word” on autism (as Sridhar claims), you’re spreading hate and bigotry. I don’t appreciate it. My amazing child does not appreciate it.

Re-reading and re-reading again, I don’t find bigotry, hatred – I find respect and admiration for the parents who deal with a difficult situation. Robert has not done months of research, but that does not mean he should not be allowed to even touch the subject, like some commenters suggest.  The fact that he talks about autism, and accepts the common definition of it being a developmental disorder does not hurt children suffering from it, does not place a stigma on anyone who wants to be “just normal”.  (Update: Please read comment #91 from Baxter’s Mom)

The fact that some parents pursue more aggressive course of treatment then others, or in fact that they pursue any treatment at all does not label other autistic kids as “abnormal”.  As a matter of fact I suspect the choice between acceptance, “autism is the way I am” vs. trying to cure it strongly correlates to the severity of the symptoms.  The commenter who was only diagnosed at age 33 likely didn’t have very serious symptoms, unlike several other children whose parents report outbreaks (like banging one’s head in the wall) that can inflict self-injury.  Clearly, these are extreme cases, but they make the point that in many cases pursuing treatment may just be the right option. And again, this does not label anyone else sick.  Each family should evaluate their own situation, and whatever decision they make will be the right one for them. 

Finally, I’d like to finish this discussion on a positive note, by pointing to an earlier post of mine:  Autistic Kid Becomes Basketball Star.




  1. I’m glad that your ‘brief encounter’ inspired such a spark of interest for you. It is a complex issue as encompassed by the word ‘spectrum.’

    I hope that your interest, and others will continue to grow.

    Best wishes

  2. Thanks for posting about this. My son is almost 10 years old and has benefited much from educational approaches including ABA (applied behavior analysis). Earlier in his life we also undertook a number of biomedical interventions as referred to in your post (not chelation, which has been implicated in the death of 2 children)—from this I learned that parents need to be wary of “treatments” that promise something like “recovery” and “cure.” Autism is a lifelong neurological disorder/condition/disability and it is the case that some children also have comorbid disorders, such as gastrointestinal issues.

    I would be a little hesitant to characterize some parents of autistic children as seeking more “aggressive” treatment and compare them to parents are “making the best of the situation they are in.” First, all parents are “making the best of the situation they are in”; biomedical treatments are part of this. Second, acceptance ought not to be equated with passivity and with just “letting a child be”: Acceptance involves a full and rich understanding of what autism is, from an autistic-person- centered perspective; involves “aggressively” changing our perspective on what it means to raise a child, to communicate, and more. I can assure you, I am a very “active” mother in educating my son, and in educating those around him (as the passengers on a train coming back from New York City tonight) about what autism is.

    There is no credible scientific evience that vaccines or anything in vaccines related to autism or the increase in prevalence rates in autism. Regarding the increase in the prevalence rate is this op-ed by Professor Roy Richard Grinker and myself, “If There’s No Autism Epidemic, Where Are All the Adults with Autism?”

    Thank you very much for posting about autism.


    Kristina Chew, Ph.D.

  3. Vinnie Mirchandani says

    Dr Sanjay Gupta, the CNN Medical reporter spent a few hours with Amanda (whose video you have above) …


    The reason for the rise in numbers of children with autism is one that average paternal age is so high, once the father is over 32 autism will naturally rise in incidence. The other main reason is that the definition of autism changed inn 1994 to include childhood schizophrenia which no longer exists and mental retardation. So rising paternal age is robustly associated with autism, with schizophrenia by any name and with mental retardation. Autism is bound to keep rising unless men cryobank their sperm in their 20s to 30 and stop fathering babies naturally by 33.

  5. All heart. All heart. I’d like to get permission to repaste this post in my blog. Hoping for your kind consideration. I also did a couple of posts on autism. They are at: and More power to you!

  6. Matt Savage – – is another successful autistic kid. He’s one of the best jazz musicians around and he has several CDs available. Part of the profit from sales of his CDs goes to autistim research.

  7. Zoli Erdos says

    Anitokid, sure, feel free to repost.

  8. So, after your ‘few hours’ you feel able to make a comment such as:

    If there was a choice to live life without autism, I’m sure that’s what Adam’s parents would prefer. But they don’t have that choice, and are making the best of the situation they are in.

    I know Adam’s parents very well. Like me they don’t see a cure as a necessity. I, and they, would not prefer to live life without autism. What we would prefer is that the appalling, dehumanising quackery that surrounds autism and is threatening to engulf it and the poor attitudes of people who think they know all about us after ‘a few hours’ research would buck up.

    while it’s everyone’s right to select their approach to autism, and for many acceptance is the right one, denial does not help – after all, if you could eradicate autism overnight, you’d probably do it, so let other people pursue this option… they are not doing it to hurt you.

    I would agree that denial does not help. I would pass that on to Scobble’s interview subject who is currently living in a denial based scenario that some really very dangerous treatments can ‘cure’ autism.

    If I could eradicate autism overnight I most certainly would not do it. Would you be as presumptuous over other areas once classed as psychiatric in origin? Such as homosexuality? Would you eradicate homosexuality overnight if given the option? Race? Gender? Emily Pankhurst was routinely placed in an asylum and considered mad for wanting equality.

    As a matter of fact I suspect the choice between acceptance, “autism is the way I am” vs. trying to cure it strongly correlates to the severity of the symptoms.

    It amazes me how often people who quite frankly know nothing of what they speak like to make judgements such as this one. On what basis is your suspicion founded? That it helps make your point?

    My daughter is considered to have a low IQ. Below 70. This places her in the ‘severe’ category. She used to smear feaces, bang her head, run off, have meltdowns. She still doesn’t really talk at all. We have to home educate her as our LEA won’t help us.

    I still love her just the way she is and do not want to change her. All I want to do is educate her, intervene where necessary and help raise her to become a happy, respectful autistic adult.

    I find it fascinating that you describe the video made by and featuring a ‘severe’ adult autistic as ‘disturbing’ and yet fall over yourself to wax lyrical about the cute kids. Did you ask Amanda, who blogs here how she felt about being called ‘disturbing by you’?

    and the brutal reality is that the world, the rest of us won’t learn her language.. so she is missing something

    You are missing the point. Totally. Please watch it again.

    And please, stop justifying dangerous quackery and stop assuming that ‘several hours’ research means you know what you’re talking about. You don’t.

  9. “Chelation, and mercury-contamination as primary cause are highly controversial”

    In the blogosphere and parent groups, and maybe some legal and political circles, but not scientifically they’re not. There is no credible scientific evidence that chelation should do anything for autism, and there is no credible scientific evidence the mercury is involved in any significnt number of cases.

    If you look even further into facts, you’ll find that current chelators don’t even cross the blood brain barrier to remove metals, and even if they did, there is no evidence that a reversal of autism would occur, none. The more you look at the science, the less and less “controversy” you will see.

    By the way half a million kids don’t “have” autism, an estimated half a million have an “autism spectrum disorder” diagnosis. Of that half a million, less than half are “autistic” with the vast majority having another diagnoses such as PDD-NOS and Asperger’s

  10. Zoli Erdos says


    I’m running now, will respond to some of your points later, just a quickie about Amanda’s video now.

    “Disturbing” was a bad choice – the point I wanted to make that after all the cutie-kiddie videos this one is not easy to watch.

    And yes, I did get the point, that’s why I am calling her coherent and logical – I should add intelligent. She thinks, senses and communicates. But the world does not understand her communication. Unjust or not, the “world” does not learn her language, so she has a hard time really communicating. I’m not rejecting her, belittling her, simply saying that if the “magic pill”to enable her to speak existed, she would probably like to take it. That’s why I don’t understand why those who seek that “magic pill” should be stopped.

    But I am not advocating quackery. You may have noticed I am not taking sides… how could I, why should I? I am not assuming I know anything… you’ve probably missed this part:

    “What prompted me to do a little “research” (I’m hesitant to call it such; half a day into this is nothing compared to the ongoing research that becomes a lifestyle for parents involved) …”

    I am simply asking that both “sides” let the other do what they think is right for them, without enforcing their views on the other.

    Will be back with more…

  11. For those interested in alternative vaccine schedules, please read here:

    To read the published science supporting the position of those of us who believe vaccines have played a role in our children’s autism, read here:

    Here’s what California’s DDS said in a report recently:

    “There is no evidence that a loosening in the diagnostic criteria has contributed to increased number of autism clients…we conclude that some, if not all, of the observed increase represents a true increase in cases of autism in California…a purely genetic basis for autism does not fully explain the increasing autism prevalence. Other theories that attempt to better explain the observed increase in autism cases include environmental exposures to substances such as mercury; viral exposures; autoimmune disorders; and childhood vaccinations.”

    JB Handley

    Generation Rescue

    Please note: Nasty insulting posts guaranteed to follow!!

  12. And. here is what Kev Leitch, the guy with the feigned outrage above, wrote about his own daughter soon after her autism diagnosis:

    “Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all. That changed however when she had her DTP jab.

    I know there’s been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, Naomi was a lot more dubious than me but I managed to convince her) decided to go ahead with it and on the night of her first lot of jabs Megan began projectile vomiting and developed a temperature that peaked at 102 degrees. We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldn’t find much wrong with her. We were relieved but by the end of that week we knew something was wrong with Megs. She seemed subtely different. There was nothing you could put your finger on as such but the difference was there, she was late walking and was uncomfortable around others.

    I’m sure that I’m not the only parent of an autistic child that just doesn’t know what to think anymore. We believe that the 3 in 1 jab Megan had triggered her autism and we also believe that there was mercury used as a suspension fluid in her DTP jab.

    So why exactly is the Thimerasol (the mercury preservative used in the jabs) so bad in the whooping cough vaccine that it warrants removal of the vaccine and yet the Thimerasol in the DTP (and plenty of other) vaccines is not considered an autism causative?

    Maybe I’m missing something here but the evidence for me is mounting that the Gvmt in this country need to urgently investigate mercury based vaccines of all kinds.”


    For some parents, I think the giref is so overwhelming that they choose to believe autism is somehow part of the natural order of things and should just be accepted. They don’t seem to get that many of us accept and love are children, but that we are moving mountains to address the very real and geneuine medical issues they are facing that are keeping them from ebing their true selves, much as we would pursue eye surgery if it allowed a blind child to see.

    JB Handley

  13. The knowledge that autism could be said to be a most severe.autoimmune disorder and is associated like other autoimmune disorders with full blown reactions to vaccinations is old and is found in the scientific literature on autism many times. The parents who notice a huge, negative reaction to vaccinations are not wrong in the least. The only problem is that no one tells the parents the negative reactions that children have are because of damage to the DNA in the children. It has been known for 36 years in the scientific literature that children with autism react to vaccinations and that a family history of autoimmune disorders such as type 1 diabetes, Hashimoto, and other autoimmunes is associated with a higher risk of having an autistic child. Besides advanced paternal age (over 31-32), advanced age of the mother’s father at her birth, a family history of Hashimoto’s thyroiditis, type 1, rheumatic fever, ADHD, obsessive compulsive disorders, schizophrenia, any ASDs are all associated with a higher risk of autism. Most autistic children have severe reactions to vaccines, to stress, to noise, to crowds, to smells, to touch, etc. Autism is not new and reading the literature on it from the past is vitally important. Also understanding that in 1994 the diagnosis of autism was changed to also apply to childhood schizophrenia and Asperger’s and mild problems in socialization is when things got very confusing. One has to study this subject and not be taken in by those trying to profit from an epidemic due to so many men fathering past 32 and to those who had older men fathering babies in their family trees.

  14. dyslexic_angeleno says

    Re-reading and re-reading again, I don’t find bigotry, hatred – I find respect and admiration for the parents who deal with a difficult situation.

    Here’s the problem Zoli: “respect and admiration for the parents” … but it’s not ultimately about the parents and that’s what Scoble missed. There is a big problem with framing the entire issue around the parents because, unfortunately, some commenters use it to distance themselves and some parents persist in taking the admiration and repect given too far.

    For example, in distancing themselves, you’ll hear things like: “These parents are my heroes”; “You’re a Saint, I don’t see how you do it”; “I could never have an autistic child, because they say God never gives you more than you could handle and God knows I couldn’t handle that.” These are the people who help stereotyping and bigotry to persist by making a “difference” always be about “the other”.

    Then, there’s those parents who take it too far and tell the camera how they were going to drive their autistic child off the GW Bridge, but didn’t due to their “normal child” at home (Alison Tepper Singer of Autism Speaks) and then those who encourage those kinds of statements by giving props to those who make them (Lauren Thierry, producer, ‘Autism Everyday’).

    But really and truly it’s not about the parents, it’s about the kids. The kids who have autism … in all of its flavors. It’s about those kids getting the respect and admiration they deserve. It’s about those kids getting, ultimately, to live the kinds of lives they want to live — not the life that reflects merely what their parents may see destined for them.

    To describe a certain group of people to CAUSE another group to experience THEIR lives a being “hellish” does potentially foster hate toward that group. I found Scoble’s ignorant blog post to be something akin to a hate speech toward autistics. Moreover, I found Scoble to be a bigot. Further, he certainly makes it abundantly clear that he does not want it to touch his life.

    So, yes, I will stand up for my child’s rights, his humanity, his very being when I see hate directed toward him. AND that’s what I think Scoble did and did so in such a cavalier manner. He did owe it to his reader to do a little more examination than he did, and for not doing so, he should apologize to his readership … and to all those on the autistic spectrum.

    It’s good, Zoli, that you went a little further than Scoble by looking past the two movies you saw. I’m sure you wouldn’t want others to judge the very essence of your being (by, say, your ethnic group; religious affiliation or profession) based upon a couple of Tom Cruise and Bruce Willis films, would you?

  15. Ms. Clark says

    Guess what dude. Spend a few more hours looking at the criminality, fraud and quackery behind “agressive” treatments like chelation coming from Alternative Medicine, then you’ll see that coming down neutral on something like chelation is purely idiotic.

    There’s no reason for parents to chelate a kid who is not heavy metal poisoned, and the only reason this batch think there kids are poisoned is that they are all shipping urine and other samples off to a mail-order quack lab. Like how hard is this to figure out? Not hard. Try again.

    There’s plenty of good information on the quackery related to chelation and high dose vitamins and other garbage on reliable websites.

    You can find loads of factually supported information on Kev’s blog and on mine ( Personally, I resent you using Adam’s photo as you did. I hope his mother tells you to take it off your blog. His mom is my friend, too.

    I really resent you stepping into the middle of this mess and acting like you know enough to comment. Your careless words and Scoble’s could cause an autistic child to be harmed by dangerous treatments, do you understand that?

    You think Amanda is so difficult to watch? Go talk to her on her blog ballastexistenz and learn something.

  16. Actually, I have no particular desire to speak in particular. This is because my brain is not wired for it. I had more speech when I was younger. It was painful, difficult, exhausting, and usually did not communicate what I intended to say. It left me totally incapacitated after only a short time of it, unable to do and perceive a number of things that were important to me. Why on earth would I want more of something like that when I have perfectly viable alternatives? I want speech about as much as a fish wants wings.

    Although actually the only time I really want to speak, is so that people would not consider me extraordinary in some way because I type. But that is a matter of blending in, and of other people’s prejudices. It is nice to not be noticed and singled out. But that wouldn’t really be sufficient reason to truly want speech, more like a passing whim that is borne out of various internalized crap that I don’t really need to dwell on.

    I am very aware of how the world treats my natural form of communication. I would have to be incredibly dense and naive not to notice it. But is it wrong to point out that something is wrong, just because it’s unlikely to change? Do you think that pointing out something is wrong means that I think it will be easy to make things different? But we have to start somewhere. Sign language used to be considered vulgar, animalistic, not true language, and inferior. Someone had to change that. And who else is going to do it but someone essentially bilingual? It is harder with the languages of autistic and other cognitively disabled people, because they are not formalized the way sign is for the most part. But it is no less important.

    I made the video for a little girl who was forcibly mutilated and some of the excuses given were that she had no language, personhood, etc. It wasn’t about autism, it was about something broader. People in her position have little protection from those who think their thinking and their language and their personhood is the only kind in the world. Will saying “That’s just the way it is” ever lead to even a tiny bit of justice for people in that position? Will treating those of us who try to change things as if we don’t understand how bad things are (when in fact we tend to be more aware than others of how bad things are), help anything?

    “Doing what’s right for them” is one thing. But the problem is that there is such a thing as right and wrong. And some things are wrong in some situations, even if some people think they’re right. My online friend Kassi and I are both on Prednisone, which among other things can suppress immune function. Kassi just spent a month in bed, cracked five ribs coughing, got severely dehydrated, and had multiple seizures, because of being exposed to an unvaccinated child who passed a disease to her. Certainly that child’s parents thought that they were doing the right thing in “preventing autism” (even though they probably weren’t), but how does that weigh against the harm done to Kassi, and the potential harm done to me and others like us in this regard? We depend on other people getting vaccinated in order to survive.

    Which is to say, nobody lives in a vacuum, there’s no such thing as a decision that does not affect others. It’s all well and good to say that people can do whatever they want. And within certain restrictions, legally, they can. But it doesn’t mean that everything anyone wants to do, or everything anyone thinks is right, really is right. And it doesn’t mean that the choices a person makes “personally” don’t affect other people just because someone labels it a “personal choice”.

    So basically, I don’t buy that the things people do are harmless. Of course, nothing anyone does is fully harmless, there will always be consequences, good and bad, of any action. But it’s important to look at what is the least harmful thing to do. Good intentions help but they’re not enough. People have to look at why they’re doing something, what the consequences are of what they’re doing.

    My intellectual background in this matter, by the way, is from the disability rights movement, and the self-advocacy movement, and a long study of the history of things like this and more. There is a lot of context behind everything I’m saying, that may be unfamiliar to people who don’t have that background, but is definitely there and definitely not formed out of nowhere.

    So, no, I don’t see it as good to just let people do and say harmful things without comment, and I don’t think there is any particular virtue in neutrality.


  17. Cut the crap. Just talk plain English. You sound like ya all are trying to be smart or something. Here is what autism is NOT: It’s not a mentally ill clever person with sociopathic fixations that feigns they are autistic (aka criminal), it’s not the Horse Boy(a boy with ADHD who ended up liking horses), it’s NOT Amanda Baggs (who has a psychogenic case of autism, as in in her mind) It’s not Donna Williams–(a woman who has a multiple personality with one of them thinking she is autistic and being so convinced she’s actually studied the definition and learned to be autistic) It’s not Ari Ne’eman (who has aspergers ) It’s not Jenny McCarthy’s son (who has laundau kleffner never was autistic) If you want to see high functioning autism see Temple Grandin (who has autistic LIKE behaviors with severe aspergers) or the movie Rain Man. If you want to see a raw video coverage of severe autism where the young adult is punching self in head or having seizures go to you tube and type in: “autism self injury” or “reality shows you won’t see on tv about autism” or “severe autism when there is no answer

  18. DownUThunder says

    April is autism awareness month and how aware is the media? Not very aware, it seems. They still haven't figured out what autism is and what it isn't.


  1. […] know very little about autism.  My only exposure was a few days after I wrote a post about autistic kids – for the next 3-4 days I was totally submerged in intense discussion on a number of blogs and […]

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