• Author: Sullivan
• Comments: 119

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119 Responses to “Why I don’t like “I am autism””

1. 
   Tweets that mention Autism Blog - Why I don’t like “I am autism” « Left Brain/Right Brain -- Topsy.com
   September 25th, 2009
   06:28:28

   [...] This post was mentioned on Twitter by Dianne. Dianne said: RT @badscienceblogs: Why I don’t like ‘I am autism’ http://bit.ly/vsf7b [...]

2. 
   Irene Burton
   September 25th, 2009
   09:44:07

   I so agree with you on so many points here. When I watched it for the first time yesterday I was deeply offended on several levels. I am still too angry to express my feelings properly. Yesterday I emailed autism speaks UK, which is where I live, to say how I felt, that I was offended, and I hoped they would not be using this film for any sort of promotion here. Thankfully this was their response..

   ..’The UK charity Autism Speaks is a separate entity from the US charity of the same name. Autism Speaks UK did not contribute to the making of this video and we do not share or support the views expressed in it, which are those of certain members of the board of trustees of Autism Speaks in the USA’..

   They forwarded my thoughts to autism speaks in the states, here is their response..

   ..’Thank you for contacting Autism Speaks. I am sorry that you found the video offensive. That was absolutely neither our nor the creator’s purpose.

   The short film I Am Autism was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. Set to a personal poem by Mr. Mann, the short film features home video footage voluntarily contributed by families around the world affected by autism. It is an intensely personal expression by these two fathers and their hope is that the piece inspires other voices and artists in the autism community.

   Autism Speaks believes that all individuals with autism and their families, regardless of their perspective or the nature of their disorder, should have the power to be heard.

   No one perspective can ever be the definitive voice of autism. We encourage everyone in the autism community to acknowledge the myriad voices and have tolerance for the spectrum of opinions.’..

   The following is what I have sent back to them…

   ‘I assure you that I appreciate the credentials and personal connections involved in the production of this film, which of itself, is admirable. I also appreciate that I am speaking from a British perspective, where health care and society are viewed differently from what appears to be the US perspective.

   I sincerely hope that more people in the autistic community are moved to express their feelings by seeing this film. From my own personal experience as the mother of a 23 year old woman with severe autism, had I seen this film 22 years ago I would have been in despair, and yesterday as I watched the film I could only wonder at the distress it will cause. Personally, I will be suggesting that several people I know with autism including my own daughter, should not watch it should the opportunity arise, I know they would find it an uncomfortable and upsetting experience.

   Again, I appreciate the personal nature of this short film and presumably personal finance and time was used to produce this work. May I humbly suggest that less affluent people in the autistic community, world wide, would have a different take on how autism affects them and are not in position to produce such eloquent works of art, nor the means and connections to make them public.’

   As you can probably tell, I am still angry. This ‘short film’ is offensive and dangerous on so many levels.. Ivory towers come to mind..

3. 
   farmwifetwo
   September 25th, 2009
   12:47:05

   “They are a community of warriors.

   OK, that’s what I don’t like. If I were to make an appeal for funding (which is what I assume “I am autism” is for Autism Speaks), how would I frame it? What would I change?”

   Damned right we are. Who do you think helps, works, fights to get that child, that adult everything they deserve, everything they require to live a happily, content life. One that helps them live with the disability that is autism in a manner that is positive and productive.

   Isn’t the autistic.

   Who sits through all those meetings – like my IEP’s (x2) yesterday – and Kristina’s today.

   Isn’t the autistic.

   Who fights for their child’s happiness in a group home setting (Susan Senator, Casdok) and tries hard to come up with a perfect solution to a problem and a system that is anything but perfect.

   Isn’t the autistic.

   As for those that live without services… if you can manage without them… then you don’t need the diagnosis. That makes you as normal as the rest of us. So, don’t EVER talk for us that do live with those that cannot speak for themselves as we try our DAMNEDEST to give them the best life, the happiest life, we can for them.

   Read more: http://leftbrainrightbrain.co......z0S7MIiSbG

4. 
   Kwombles
   September 25th, 2009
   13:10:15

   Well said, Sullivan. Nowhere in this video was the autistic individual considered. How many young parents will see this and think their marriage is doomed to fail, will take this personification of autism and place it onto their child and see their child as the monstrous entity AS presented autism as?

   How did this promote acceptance for autistic individuals, empathy for their challenges, appreciation for their strengths? How did this promote community building? How did it advocate for adaptive coping and resiliency?

   As Sam on Burn Notice would say, bunch of bitchy, whiny…. You know? That’s what I walk away from the video with. And my disappointment increases with this subset of parents who would present autism as a monster trying to destroy their lives rather than focusing on how autism effects the child, not to mention how such maladaptive coping on the parents’ parts does.

   You’ve had lots of comments on Guest Blogger’s post; those parents locked into their autism-mercury world truly don’t see their behavior (as detailed on that post) as abusive. If they engaged in the kind of crackpot therapies with a child with Down Syndrome; if a parent placed a nicotine patch on a child with CP, would this be tolerated? Just because you as a parent find a doctor willing to take your cash and hold your hand as you engage in woo doesn’t make your actions or the doctor’s ethical, moral, or even legal. I tell you what, maybe I’d have more appreciation for these types of parents if they were sticking those supplements and the IVIG and the chelation down their own throats and into their own bodies before they made their children into guinea pigs.

   This film is appealing to those parents.

5. 
   Joeymom
   September 25th, 2009
   13:16:32

   Why apologize to us? Yeah, we work hard. That’s nothing compared to the work our Joey does to try to communicate, move, and connect- and that’s just a small part of what he must do not only to survive, but to grow and thrive in the world.

   No doubt here- Joey is the hero. We’re just the Robin to his Batman.

6. 
   Kwombles
   September 25th, 2009
   13:18:31

   Are you seriously kidding me, farmwifetwo? You just proved the entire point I made even as you were making yours. It’s all about the parent. Wow. How can you have that much contempt for autistic adults? Do you not get that children grow up and become adults, and autistic children grow up to become autistic adults? What the hell? Every now and then you’ll make a post as you did at Emily’s where I go, okay, that wasn’t bad. You did that just the other day, and I though, well, okay, she can offer something relatively positive.

   And then you go and doubly make up for that.

   You get more bitter by the month. Serously, since I have three on the spectrum, one of whom is a beautiful adult son who is significantly impaired and not going to achieve even partial independence, does my voice count, since you have just written that the adult autistic’s does not?

7. 
   Joseph
   September 25th, 2009
   15:34:19

   @farmwifetwo: No, you’re not a warrior, you’re just a parent, doing what a parent feels they have to do. I’m just a parent too. Don’t pat yourself on the back too much there or you might hurt yourself.

   I didn’t like the part of the post about autistic people being heroes, either, to be honest.

8. 
   Leila
   September 25th, 2009
   15:45:49

   Autism Speaks should take note of this. A much better video would be letting the autistic kids and adults talk (or type) about their challenges, or maybe just show them going about their lives. That would be much more poignant than the “scary-mocking” voice over of the narrator or the whiny tone of the parents.

9. 
   Carol
   September 25th, 2009
   16:07:39

   Autism speaks ALOT differently in our home. And I wish that “Autism Speaks” would stop trying to speak for all of us. Is there a point in a parent’s life where they might only hear a “voice” that sounds like the one this filmmaker says belongs to autism? The voice I heard in the film did not and does not belong to the autism we know. It sounds more like the voice of one’s own self-doubt when presented with a parenting experience that is unexpected or different from most, from the frustration of trying to connect with your child in a way you feel comfortable without realizing that they might want to connect with you in a different way, from the exhaustion of trying to break free from society’s restraints on its members that think and act differently, from feelings of guilt and inadequacy because you don’t have enough resources to provide what is needed, from the anxiety of encountering a general lack of understanding and tolerance from the public at large. Sometimes, it can be a challenge to ignore that “voice”. In my house, we try our best not to listen to it anymore. Instead, we just accept each other, stay focused on our strengths, and celebrate the gifts we have to offer.

   I hope you will check out this video.
   http://www.nomyths.org

10. 
    Synesthesia
    September 25th, 2009
    17:00:17

    Why can’t it be Autism LISTENS to actual autistic people instead of leaving them out?
    No, it’s all about the parents and their dreams of so—called normal children who don’t even exist. Never mind the challenges folks with autism go through. The bullying. Parents pushing them into the round hole of a normal that isn’t real. That needs to be let go of so they can REALLY understand what their child is trying to communicate.
    It’s just annoying for autism to be framed that way. As some sort of inconvenience for the parent. But it’s really hard to be different in a world that is hostile towards your difference.
    They ought to look at ways to stop aversives, give support to children in school, give support to adults trying to make it in the confusing NT world. That sort of thing.
    But they don’t want to listen. They WILL not listen. They will only drown out the voices of people they claim to want to help, and that’s quite sad.
    They’re really missing out.

11. 
    Chris
    September 25th, 2009
    17:16:17

    Kwombles:
    

    If they engaged in the kind of crackpot therapies with a child with Down Syndrome; if a parent placed a nicotine patch on a child with CP, would this be tolerated?

    Back when we first got internet in the mid-1990s I looked at lots of different disability boards. Back then they were either message boards run by the ISP (ours was Compuserve) or Usenet. There was not much about my kid’s diagnosis (he just turned 21, and I remember how hard it was to get folks to understand that it was not normal for a sweet affectionate three-year old to be non-verbal). I read about other crackpot ideas, and yes, they were being used on kids with Down Syndrome and cerebral palsy.

    Carnitine was one of things I think were first proposed by parents of kids with Down Syndrome, and I found this post:
    DS & Leukemia-carnitine deficiency.

    And of course there was the Doman-Delacato patterning method of intensive physical therapy that was pushed heavily in the late 1980s and early 1990s. Glenn Doman’s books were just long advertisements for his institute in Philadelphia, and there are some offshoots still around. Alex Doman’s outfit in Utah posted an ad for Autism Twitter Day on this blog (I challenged them on their qualifications, and they were very nice to admit that young Mister Doman did not really have any). Here is another Usenet posting about the effect of the intensive physical therapy: “Questions about patterning was Re: I feel vindicated”.

    The biggest difference is that the causes of DS and CP are known (CP not quite, though I did have one rabid anti-vax mom on the listserv I was on tell me she knew of three kids at the Mayo Clinic who got cerebral palsy from vaccines!). Perhaps that is why you don’t see Down Syndrome or cerebral palsy kids treated the way autistic kids are by Autism Speaks and the parents who are typing away on the other post on this blog.

12. 
    Squillo
    September 25th, 2009
    18:02:10

    @farmwifetwo:

    I agree that parents of children with disabilites are warriors (although I disagree with your assertion that those with the disabilies are not in the fighting.) What bothers me in the AS video, as in much else they say, is that they seem to be at war with autistics, rather than with the all those things that make life for families with autism much more difficult—things like fear, and prejudice, and ignorance.

    Many of us fight little wars every day; sometimes as co-warriors with our kids, and sometimes on their behalf. That’s not what I get from this video. I get that “we parents are the warriors, and our kids are the inert collateral damage.” YMMV, of course.

    I agree with you that no one group should presume to talk for another, even within the autism community (which is not homogenous) but that is precisely what AS claims to do.

13. 
    RethinkingAutism
    September 25th, 2009
    18:14:11

    I don’t feel that I am the hero at all (as a parent). I agree with your assessment. My child works so hard on a daily basis. I have so much respect for him. He is my inspiration. He is my hero. But neither of us is fighting a battle against autism. All the problems I have come across are not with autism, but other people’s misconception of autism.

14. 
    Shanna
    September 25th, 2009
    18:39:38

    I completely agree with this post. After the initial anger and multiple viewings of the video, I sat down and thought about the reasons it made me so angry. The first thing that I came up with was that it was all about the parents.

    I think there seems to be two type of parents of autistic children, those who are devastated by their child having autism and those like me who accept it and become stronger, better because of it. I certianly do not feel I deserve some award for sitting through an IEP meeting.

    I think some people have a very difficult time coming to terms with their children being different. I just can’t stand when people try to group autism with things like pediatric aids and cancer like they did in the video. How can you compare autism to something that kills children. My son is very much alive and healthy. I get to treasure his smiling face everyday. I think it is pretty insulting to mother’s who have lost their children to such illnesses.

    The parents that this video speaks for can not possibly see down the road when their children become autistic adults. They are so consumed with “curing or recovering” their child today, that they do not even want to think about tomorrow. These are the same parents that desperatly need to blame something or someone for their child’s autism.

    I am disheartened that a majority of the world thinks that Autism Speaks and that video in particular are an acurate representation of autism and our community.

15. 
    Synesthesia
    September 25th, 2009
    18:45:52

    That annoys me as a person who ACTUALLY HAD CANCER between the ages of 2-5.
    Couldn’t they find a more respectful way of trying to get people to donate money to them?

16. 
    Emily
    September 25th, 2009
    22:20:18

    “Fourth, with apologies to my fellow parents, but the autistics really are the heroes.”

    Yes.

    I’m no warrior. I’m doing the job I signed on to do when I decided to bear children. I took on that responsibility—whatever it entailed—when I, an adult, made that decision. There’s nothing warrior like or heroic in that. Heroes face fear and move forward in spite of danger. I can’t lay claim to that.

    But these kids who fight every day to learn or bear the inputs around them or self regulate, who live minute by minute in ways that the neurotypical could only vaguely understand if they were packed into a echo chamber full of revving jet planes, these kids and autistic adults are the real fighters. I think of the severely affected children I know, how I’ve known them to work up the courage to do something terrifying to them, something that to a neurotypical would be barely noticeable. I’ve watched these kids hesitate, wait, stim, think, and then rush headlong with extraordinary bravery into it. That’s a hero.

17. 
    bensmyson
    September 26th, 2009
    00:01:34

    Sigh… Well I tell you what, as a parent of a child diagnosed with autism, autism ought to scare the sh*t out of every new parent on the planet. It’s not something you wish upon your child, hell, any child. That’s what this video was about.

    Autism is the devil. I realize it is a part of who my child is, but my son was not born with autism, he was injected with it. I know who my son is, I held him, played with him, talked with him, looked him in the eyes and laughed with him for the first year of his life, 366 days to be exact, then he changed, drifted away, replaced with someone we didn’t recognize. It took a long time, hard work to find him, we get a piece or two back every now and then. No one loves anyone more than we love Ben and no one HATES anything more in this world than I hate autism. Saying Ben is autistic is like saying saying a child victim of a gunshot wound to the head is a bullet hole. Our children are victims of an environmental toxin that presents itself as having characteristics of autism. They are victims, they are not bullet holes.

    I will do all that I can possibly do to destroy autism in my son, and when I get done with that I will move on to others. I know who my son is, I will never forget, and for all I know he is indeed suffering and wants to be saved…. before he forgets who he really is.

    Ben is NOT autistic, he is not a bullet hole, he is a victim of a poisoning, a boy with a brain injury that presents himself as someone with the characteristics of autism.

    If some of you are too scared to admit how evil autism is and too hurt to accept your child’s suffering and pain, then why not just push him off a bridge and go have cocktails with your boyfriend and forget about it. But I can hear him scream, others can too, we want to save him, we want to save those who are yet to be born, we want to do everything we can do, die trying if we have to. We are warriors and damn proud of it.

18. 
    Chris
    September 26th, 2009
    00:34:34

    Thanks all. My son had seizures as an infant. He was disabled by the seizures during a real illness as a baby, plus multiple stays in the hospital until he was three years old. He has medical issues that require medication for the rest of his life.

    And he is still a wonderful young man who may never live away from home or hold a job. I resent you folks for thinking that children like mine are better of dead.

    You have no real evidence that vaccines are poison, yet there is plenty of evidence that the diseases do permanently maim, disable and even kill.

    And here you are working very hard to denigrate herd immunity so that more children will become disabled.

    Autism is not the devil… these are the devil:

    pertussis
    diphtheria
    tetanus
    measles
    mumps
    rubella
    rotavirus
    haemophilus influenzae
    polio

    Leave your your pity party and show me the real evidence that vaccines cause autism! Show me the evidence (real evidence, not anti-vax websites, but real scientific studies… and definitely not the ridiculous paper written by Blaxill and friends) that vaccines cause more harm than the diseases.

19. 
    Sullivan
    September 26th, 2009
    01:30:04

    If some of you are too scared to admit how evil autism is and too hurt to accept your child’s suffering and pain, then why not just push him off a bridge and go have cocktails with your boyfriend and forget about it.

    Why do these discussions always devolve into people claiming that those of us who fight for the dignity of our children are ignoring or in denial of our children’s suffering.

    I will work tirelessly to overcome any and all pain my child suffers.

    I include in that emotional pain. I consider that quite real. Emotional pain can stem from being stigmatized by the perception that one has a “devil” inside, causing one to act very different from most people.

    I think I will pass on the chance to push my child off a bridge, if you don’t mind.

20. 
    Shanna
    September 26th, 2009
    01:42:23

    I believe my son was born with autism. I noticed the red flag warning signs as early as 6 months even though nobody else believed me. He was born premature. Looking back at his time in the NICU, I can remeber just how much more sensitive he was to noise and being touched compared to the other babies in his wing.

    I am not arrogant enough to claim I know the cause of all of autism. I believe that it has been proven that vaccines are not the cause. I can not say if there is another factor that contributes to children regressing after a year of age. I am not a scientist, I am a mother.

    What I do know is that I resent someone saying that autism is evil. My son is autistic. And there are a number of autistic people who post on this very site, who are the furthest thing from evil.

    I read your comment and can only feel pity for you and your son. He has to grow up in a world where you loath a part of who he is. That you will probably never accept anything other than getting back this “normal” child you once had and now have been robbed of.

    I am not looking for a “normal” child. I have been given an angel. Yes, we may have to work harder at certian things. But he is one of the happiest children I know. I am thankful to him for making me a stronger, more compassionate human being. He has taught me to really embrace the little things in life and to not take anything for granted. He is a blessing not a bullet to the head.

21. 
    Kwombles
    September 26th, 2009
    01:49:08

    Sullivan,

    Bensmyson wins the offensive post of the week. I mean, I thought that Jen and Christel were bad, but Bensmyson ties with Mary for offensive. He can stay the hell away from my kids. They weren’t poisoned. They didn’t regress. I didn’t lose them and autism isn’t evil and sure as hell isn’t the devil. But knowing where Bensmyson stands on the situation, in case we’d somehow missed that from the AoA coments, is a good thing. Bensmyson’s attitude perpetuates the stigma against individuals who differ from the neurotypical and is beyond offensive. Bensmyson is autism speaks and is a huge part of the problem.

22. 
    bensmyson
    September 26th, 2009
    03:00:41

    So I am the devil now huh? I said nothing about any child being better off dead. To me anyone not fighting to recover their child might as well push them off a bridge. My child is NOT autistic, he has autism and because he has been diagnosed with autism he is a victim of environmental toxins, in Ben’s case it was a vaccine manufactured by Merck called ProQuad. It caused encephalitis, that much is a fact, what other neurological damages caused by the encephalitis and or other injuries is unknown at this time. But my science on this took place in front of my eyes. I am sick to death of excusing those of you who have put your brain injured child in your closet saying there is nothing you can do about it, its just the way things are. Have you never wondered what happened?

    By not vilifying autism as the devil that it is you are ruining the lives of others. How many children, healthy children have died from anything, car crashes, measles, choking on a balloon, tetanus, gunshot wounds, rotavirus? How many die from autism? 6 months ago a 9 year old girl with autism fell into a fountain and drown in 3 inches of water before someone noticed. Seems to me I read something the other day about John Travolta’s son. Anyone have any idea the number of those with autism that have died from complications of autism?

    Autism comes from a brain injury and my son’s autism came from a brain injury caused by a vaccine, yours may have come from something else, statistics show he wasn’t “born” with it. It is environmental which means it is man made.

    I did not enlist my son in a program to save the herd from chicken pox or the measles. I was told vaccines are safe and they are not. My son may be a one in a million case but the long and short of it is my son’s life is more important than yours, more important than 100,000 kids lives. He is not autistic, he is a victim of an epidemic that is now being seen in one out of every 38 boys. If you can live with that, to hell with you.

23. 
    Synesthesia
    September 26th, 2009
    03:05:54

    By vilifying autism you’re making life worse for people who ARE autistic.
    Because it’s not helping to understand what autism is, how people with autism see the world and how to help them navigate a world that is hostile towards them.
    Words like “brain injured” and “victims” don’t do a thing to help that cause at all.

    Plus children without autism can die in 3 inches of water. It doesn’t mean autism should be compared to cancer! It’s annoying to do that and doesn’t help at all.

24. 
    bensmyson
    September 26th, 2009
    03:33:36

    Synesthesia, then say it, say autism is wonderful, it makes greatness, tell us all that children with autism will or can grow up to be the next Einstein. Tell us it can’t be prevented. And most importantly tell us that these children diagnosed with autism want to be that way.

    Autism is not a person, it is an epidemic that has the ability to kill.

    Yesterday’s news http://www.smh.com.au/national.....-g4se.html

25. 
    Synesthesia
    September 26th, 2009
    03:41:22

    Autism isn’t an epidemic. It’s not a disease. It doesn’t kill like cancer does, which I had from the ages of 2-5 and could have died from.
    It’s not well understood, and Autism Speaks just muddies the water.
    Not everyone can become the next Einstein. That’s kind of difficult, as Einstein was hyper good in math and most people are not that good in math. Plus they might end up creating something WORSE than nuclear bombs, which folks do not need more of.
    But, autistic people should be allowed to reach their full potential like everyone else should be able to.
    With all of this talk of, oh, no, my child will never be NORMAL (WHICH DOESN’T EXIST.) that will make things a lot more difficult for autistic people.
    Which really is what I think neurodiversity is about.

    Perhaps if more people actually tried to understand autistic people instead of just labeling them in the most negative way possible, maybe they’d understand what folks with autism want…

    Shame Autism Speaks probably never read With the Light… Great Manga. Especially the part where someone who works with autistic people or had an autistic child said that autism is something you work with and not something you fight.

26. 
    Shanna
    September 26th, 2009
    03:43:52

    You are not the devil. You are just a sad and deluded woman who has not come to terms with the fact that your son has autism. You seem determined to make a distinction between autism and being an autistic. Which causes me to wonder why I am wasting my time trying to rationlize with someone who is obviously irrational. You shudder to have your child labeled as an autistic like it’s a dirty word. You are just sad.

27. 
    Martha
    September 26th, 2009
    03:46:28

    Wow, BenMySon- I am sorry to say, is a complete and utter ignorant idiot. I have autism myself, Aspergers, I’m 19—and in NO way is it bad enough that I need to be “pushed off a bridge” for for not being able to fix it. “Complications of autism”? It’s a social disorder. Give me a break. The child drowning could have happened to any child. You truly sound like you are the one not cut out to be a mother – your child would be far better off with somebody who can actually see them as a human, and love them as they are, rather than trying to kill something that they have inside them. Just because the child is different, doesn’t mean it is suffering. I have lived 19 years with autism and I have never thought it “suffering”. Not enough to kill myself over. Sure, life is more difficult, but we are stronger for it. We can make friends and get married to people who can actually accept us, and people like you, BenMySon, are what makes our lives difficult. It’s not the autism, it’s people like you.

    You are ridiculous. And this video, as well as benmyson’s ignorant comments both enrage me and make me feel desperately ill.

28. 
    Joseph
    September 26th, 2009
    04:16:12

    Saying that autism is a killer is like saying that maleness is a killer, assuming that in fact autistics have a somewhat higher risk of choking, drowning and so forth than non-autistics (not exactly a demonstrated fact, but plausible.) The risk of death in autism is still quite small to be an actual constant worry people should have.

    Those sorts of arguments are pretty ignorant. The “epidemic” (or “autistic adults don’t exist”) argument is starting to get to the point where it’s going to be considered a form of denialism in a few years. The “it’s like my son was shot in the head” argument is ridiculous on its face, and is clearly just a way of blaming an external force for the kid’s condition.

29. 
    Sullivan
    September 26th, 2009
    04:22:10

    Synesthesia, then say it, say autism is wonderful, it makes greatness, tell us all that children with autism will or can grow up to be the next Einstein.

    I know you weren’t speaking to me directly, but I will answer anyway.

    If I felt that way I wouldn’t spend so much time advocating for a better life for adults. That is something I find sorely lacking in most autism organizations.

30. 
    BetteNoire
    September 26th, 2009
    06:50:24

    “My son may be a one in a million case but the long and short of it is my son’s life is more important than yours, more important than 100,000 kids lives.”

    You are a self-absorbed, evil bitch. You’re so greedy to feel good in the moment that you’ll do and say anything, and most obviously as you just revealed, sacrifice anyone and everyone to get your little feel-good ego fix. Look down the road, woman. For once in your life, try and think about the consequences of your actions as they really are, rather than the fantasy you keep selfishly indulging yourself with. You’re not accomplishing anything good AT ALL with your current approach.

31. 
    Ali
    September 26th, 2009
    08:16:57

    And most importantly tell us that these children diagnosed with autism want to be that way.

    Well, troll, I have autism and I want to be this way. I bet your son wants you to stop harassing him and accept him, too, but I doubt you ever will until he’s old enough to remove himself from your abuse.

32. 
    Monica
    September 26th, 2009
    13:39:01

    “but the autistics really are the heroes. There are kids working harder in kindergarten than some people work in grad school. There are adults working harder just to get through the day than I do at work.”

    Very well said Sullivan.

    What I do for my kids is nothing compared to what they accomplish every single day.

    Parents need to get over themselves.

33. 
    bensmyson
    September 26th, 2009
    14:01:45

    “I have autism and I want to be this way.”

    Of course you do, most schizophrenics will refuse to take medication because it alters them, they do not want to change either.

34. 
    Shanna
    September 26th, 2009
    14:31:26

    Some people are just not cut out to be parents. Some people are not cut out to be human beings. Some of those people happen to be parents to children with autism.

35. 
    bensmyson
    September 26th, 2009
    14:32:48

    “But, autistic people should be allowed to reach their full potential like everyone else should be able to.”

    Exactly my point. But how is it a 3 year old works to reach his full potential without help? He can’t, he needs parents who see his autism as something that needs immediate, aggressive therapy with a goal of reaching this potential. My anger is that when parents who have come to “accept” their child’s brain injury as a personality difference, a quirk in socialization, they come between my son and his potential. How do I get legislators to hear me when their neighbor refuses to accept the severity of their child’s brain injury and it’s cause. How do I force a school system to aggressively work with my child, to heal those torn neurons and synapses, when other parents look at school as free daycare instead of an opportunity to free their child from autism?

    We need someone to stand up and say autism sucks and it looks as if Autism Speaks has done that.

    I know some of you do not have the strength to accept the reality of your child’s problem, the truth is crushing and potentially life threatening. It is a broad spectrum, some of you stated you have been diagnosed with autism but know that on the other end of the spectrum are others, many others who as adults need around the clock care and feeding, totally dependent on others in order to survive. Do not focus the spotlight on your miraculous ability to cope in society at the expense of the majority of others whose lives may actually depend on someone less selfish.

    And no, a typical 9 year old that slips and falls in 3 inches of water will not drown as the girl with autism did. Why the care person of this child wasn’t arrested is a sick mystery only some of you I’m sure will want to explain away as “stuff happens”.

36. 
    Shanna
    September 26th, 2009
    15:17:43

    I think this is where you are mistaken. You assume that because I accept my son has autism that I am not working just as hard as you for him to realize his potential. He goes to therapy five days a week. I drive him twice a week an hour there and an hour back in order for him to recieve private one on one therapy, which we can not afford. When we are not in school, we are working at home.

    I am a huge advocate for my son. I pushed for a diagnosis when all of the doctors around me said it was to early to tell. I moved for a period of time in with my parents because my husband was in school and the small town we lived in did not offer the services he needed. I don’t think anyone on this site does not want better services to be provided for autism.

    Here is where we differ. I do not find the truth of my son having autism to be “crushing or potentially life threatening” no more than I would find a son who was deaf, blind, or handicapped to be “crushing”.

    You are obviously incapable of showing any real compassion or feeling for people with autism. You think you are a warrior but you are at war with the wrong thing. You think the only way to get action is by vilifying autism but at the end of the day you are vilifying your son. Why would we as a community want to further stigmatize our children? Why would we want to make them sound like monsters? If we can not see the beauty in them, how can we expect others to accept them.

37. 
    Kwombles
    September 26th, 2009
    15:26:26

    Well said, Shanna. I read this last Bensmyson comment and came here to respond and saw your response. Thank you so very much for such a well-reasoned, calm response.

    I would add that Bensmyson not only appears to be incapable of showing compassion for autistic individuals, he/she appears to be unable to engage in more than black and white thinking. Acceptance and appreciation has nothing to do with not assiting, teaching, caring for or working with our autistic children, and for you to continue with that vein of thought, Bensmyson, is offensive and accurate and clearly reveals that you see yourself in a martyr’s role. It isn’t about your child, it isn’t about autistic children or adults, and it isn’t about facts. It’s about you and your need to be morally superior.

    What a shame.

38. 
    bensmyson
    September 26th, 2009
    15:42:59

    Shanna you are a voice of reason. You are the selfless, the loving, the power behind your son’s future. I totally respect your dedication to your son.

    In most cases someone with the disability of blindness or any of the other “handicaps” there is no real escape. However in cases of autism statistics show that some within the spectrum are able to escape BECAUSE of parents exactly like you, those who see autism as something that should be treated aggressively, sacrificed for, advocated against.

    My son’s autism was man made, it makes me extremely angry that he is a victim of an epidemic that quite possibly could have been prevented. My hatred towards autism is because of my love for my child, I do not accept autism as an identifier as to who he is anymore than I would identify a friend of mine as a “rape victim”. Her life is ruined right now because of an assault against her robbing her of many of the trusts and security in her social environment. She has changed, not for the better. The rapist has been identified and my friend is struggling with confronting her perpetrator in open court, reliving her victimization. Should she accept what has happened to her, forgive the evil that crushed her spirit or should she fight it with every ounce of strength she can muster? Again, my child is a victim. Autism is a product of that victimization, much the same as depression is with my friend. Both are debilitating issues and potentially life threatening if ignored…. or “accepted.” How does one accept being raped? How does one accept their child being raped? How do I accept my son being “autistic”... I don’t and apparently neither does Autism Speaks.

39. 
    Kowalski
    September 26th, 2009
    15:51:59

    Jeez, I seriously had it up to here with the lying scumbag Farmwife2.

    Autistics make huge efforts helping each other, whether that’s ASAN, message boards, e-mail lists, or websites like autistics.org.

    Speaking of which, we’re trying to raise some money to help Kat get her wheelchair repaired.
    Link.

40. 
    Sullivan
    September 26th, 2009
    16:01:22

    I know some of you do not have the strength to accept the reality of your child’s problem, the truth is crushing and potentially life threatening.

    That was a very well crafted pat on your own back. Don’t think it wasn’t obvious, though.

    My anger is that when parents who have come to “accept” their child’s brain injury as a personality difference, a quirk in socialization, they come between my son and his potential.

    And that would be a classic straw-man argument. Shanna and Kwombles have already deconstructed that quite well. I will once again note a very clever crafting of your message. You slip in a reference to the tired “they are parents of high functioning kids” theme.

    It seems you weren’t content with clever, since you then had to beat it into us that this is (supposedly) a divide between “high functioning” and “low functioning” autistics.

    It isn’t.

    You are obviously very clever. I guess I just don’t see why you aren’t clever enough to advocate for your child without demonizing mine.

41. 
    bensmyson
    September 26th, 2009
    16:08:52

    “I guess I just don’t see why you aren’t clever enough to advocate for your child without demonizing mine.”

    Sullivan please understand I do have compassion for your child. I have absolutely NO compassion for autism, Im sorry that you confuse the two.

42. 
    Sullivan
    September 26th, 2009
    16:13:38

    Sullivan please understand I do have compassion for your child. I have absolutely NO compassion for autism, Im sorry that you confuse the two.

    I have no doubt that you have compassion for my child. I believe that the people at Autism Speaks have compassion for my child.

    Their actions, however, don’t show it.

    I’m sorry that you don’t see that.

43. 
    Sullivan
    September 26th, 2009
    17:31:14

    One thing I should have said when this video first was released—
    It is easy to point out the reference to voodoo in the video and liken it to biomed.

    I do think that in this case, the director was referring to the multi-cultural approaches to autism. I am not a follower of voodoo (vodun), but I do think of it (in the real form) as a real religion.

    http://www.religioustolerance.org/voodoo.htm

    I was recently chastised on this blog for not capitalizing the g in “god”. I don’t do that because I don’t want to single out any one religion or god (say the Christian god) as “true”. In case anyone is wondering, I do try to capitalize the C in “Christian” since Christ is title referring to a specific person (almost like a proper name).
    http://en.wikipedia.org/wiki/Christ

    Thanks to the transcript that codeman38 posted
    http://community.livejournal.c.....15706.html

    here is the voodoo reference in context:

    all: We are the United Nations.
    man: We are coming together in all climates.
    woman: We call on all faiths.
    woman: We search with technology…
    woman: ...and voodoo…
    woman: ...prayer and…
    man: ...herbs…
    man: ...genetic studies…

    I’m assuming that he meant calling on spirits for help, or something similar. Not something like experimenting on the child or demonizing the child (as in an exorcism).

44. 
    Emily
    September 26th, 2009
    21:43:29

    I think that the real epidemic here is narcissistic personality disorder. An entire generation of people seems to be reproducing with the idea that doing so is all about them. That’s the epidemic. And I’m dead serious about that. All I see in these parents who post about how autism is the devil (an extraordinarily melodramatic comparison, and how ‘bout that RAPE stuff?) is I I I I I me me me me me. My dreams. My embarrassment. My life. My blame shifting. And an apparently complete unawareness of how manifest their narcissism is. Anger. Blame. Self centeredness. Self blindness. It’s all there. It’s all about them, their fight, their warrior momness, their anger, their feelings. Ugh.

    The thing is, I feel compassion for them and their very real struggles, their difficult lives, their having to struggle with their child’s pain. Huge compassion. But they make it so hard to keep from pitching battle on behalf of their children against that selfishness, children who earn the compassion unalloyed. Wouldn’t their difficult struggle be better if it were soothed with understanding, if the anger could be allowed to dissipate, if vitriol could be left out of it? How is all of this anger helping anything, most of all these children and the adults they will grow to be? Everybody’s so irrationally pissed off—and it’s a waste.

    Vaccines are not a cause of autism. Saying it one million times while dancing backwards around the fire, swallowing handfuls of “natural” supplements, and tossing some eye of newt in the air still doesn’t make it so. No one’s autism is “man made” unless someone’s figured out how to implant synthetic neural networks and I haven’t heard about that yet.

45. 
    Kwombles
    September 26th, 2009
    22:04:49

    Well said, Emily. :-)

46. 
    bensmyson
    September 26th, 2009
    23:03:05

    Emily I read your blog, I see a great deal of I,I,I,me,me,me there but then I can understand considering you are suffering great pain and quite possibly severe future limitations, to say the least.

    “A cervical spine myelopathy and thoracic cord lesions don’t have other causes than demyelinating disease (i.e., multiple sclerosis).” from Emily’s blog

    A ruling from Federal Vaccine Court—that MMR vaccine caused an autism spectrum disorder in a young boy named Bailey Banks—The Vaccine Court’s Special Master Abell ruled that the MMR vaccine produced a side effect in Bailey called acute disseminated encephalomyelitis (ADEM). ADEM is a neurological disorder characterized by inflammation of the brain and spinal cord. The disorder results in damage to the myelin sheath, a fatty coating that insulates nerve fibers in the brain. ADEM can be caused by natural infections, especially from the measles virus. But it also is a recognized post-vaccination injury, especially from vaccines for rabies, pertussis, influenza, and MMR.

    Evidence presented to support an MMR-ADEM link was compelling. It included a 1994 report from the Institute of Medicine that said it was biologically plausible for a vaccine to “induce… an autoimmune response… by nonspecific activation of the T cells directed against myelin proteins.”

    In fact, both parties in the Banks case agreed “that the IOM has cited demonstrative evidence of a biologically plausible relation between the measles vaccine and demyelinating diseases such as ADEM,” the Court wrote.

    Most cases of ADEM (80%) are in children. Symptoms usually appear within a few days to a couple of weeks. They include: headache, delirium, lethargy, seizures, stiff neck, fever, ataxia (incoordination), optic nerve damage, nausea, vomiting, weight loss, irritability and changes in mental status.

    Some will argue that Bailey does not have an ASD. They are simply wrong. The diagnosis of PDD-NOS was added to the list of autism spectrum disorders in the 1980s.

    I’m tired of hearing how vaccines are safe. Merck themselves filed with VAERS that 3 deaths were caused by their now black-labeled MMRV vaccine ProQuad in November of 2008.

    Emily, if you were to find out your own pain and suffering were caused by a vaccine, wouldn’t you be a little angry? If someone told you that eating 2 pounds of carrots would ease some of your pain, wouldn’t you try it? If it worked for you wouldn’t you want others to know?

    I’m sorry your life sucks, I’m sorry doctors have such a hard time finding out why you are sick. I’m sure it is just one of those things you want to embrace.

    Best of luck.

47. 
    dedicated lurker
    September 26th, 2009
    23:16:15

    But he didn’t have PDD-NOS. He had Pervasive Developmental Delay. While all autism is PDD, not all PDD is autism.

48. 
    bensmyson
    September 26th, 2009
    23:36:22

    The Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR (fourth edition, text revision) the five pervasive developmental disorders (PDD), more often referred to today as autism spectrum disorders (ASD)

    Pervasive Developmental Disorders

    299.00 Autistic Disorder
    299.80 Pervasive Developmental Disorder, Not Otherwise Specified
    299.80 Asperger’s Disorder
    299.80 Rett’s Disorder
    299.10 Childhood Disintegrative Disorder

    “The pervasive developmental disorders, or autism spectrum disorders, range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett syndrome and childhood disintegrative disorder.” From the NIH website http://www.nimh.nih.gov/health.....ndex.shtml

    From the court hearing transcripts:

    Dr. Lopez’s diagnosis appears to conflict with the diagnosis given by Bailey’s pediatrician on 20 May 2004, who saddled Bailey’s condition with the generalized term “autism”; however, that pediatrician later acknowledged that use of the term autism was used merely as a simplification for non-medical school personnel, and that pervasive developmental delay “is the correct [i.e. technical] diagnosis.” Pet Ex. 35.

    I hope this clears it up for you.

49. 
    Kwombles
    September 26th, 2009
    23:41:05

    Bensmyson,

    That last comment is beyond the pale. And you should know that it is. Seriously, are you having major personality shifts between posts? You’ll say something halfway reasonable and then come back with something so unbelievably offensive.

    Emily writes a lovely blog that focuses very little on the health issues she faces. It is an optimistic blog that focuses on adaptive coping and finding answers to the problems she and her family face. It is not all lightness and she deals honestly with the very real difficulties her children face. For you to do what you did here is beyond nastiness and reflects a meanness of character that has to take readers’ breath away. You really should be ashamed of yourself. I doubt you will be. And I can’t help but wonder at just how nasty a person you are in the real world. Sullivan gave you the benefit of the doubt earlier today, but I will not. I’m not certain compassion is something you are at all familiar with.

50. 
    Kwombles
    September 26th, 2009
    23:42:13

    Okay, not the last comment; the one to Emily. Went through another personality shift, didn’t you?

51. 
    dr treg
    September 27th, 2009
    00:01:21

    “No one’s autism is “man made”...”
    An interesting comment. If autism is not “man-made” then there are only a few possibilities for the epidemic (another thread on this site concluded that only 25% of the increased prevalence from 12 in 1,000 to 1 in 150 was due to alteration of the criteria for diagnosing autism)

    1. There have been multiple spontaneous mutations.
    2. More of the heterozygotes are procreating with each other.
    3. Some as yet unidentified natural immunogen in the environment has reared it`s head and is affecting all of these children increasingly over the past few years after remaining dormant for centuries or that there is a new natural immunogen.

    With the rapid changes in man`s development and interference with nature over the past few decades I wouldnt be too sure that the statement “No one’s autism is “man made”...” is true.
    Perhaps man`s interference with nature could be the cause.

52. 
    Sullivan
    September 27th, 2009
    00:36:55

    For anyone who thinks the Bailey Banks case is definitive proof of vaccines causing autism, consider the title of the decision:

    Non-autistic developmental delay; Acute Disseminated Encephalomyelitis; Expert Credibility; Evidentiary Reliability; Scientific Validity; Burden of Proof; Causation in Fact; Proximate Causation

    I personally find that decision far from very clear. I don’t know why they use “Pervasive Developmental Delay” rather than “Disorder”. They refer to the DSM-IV at times and to pervasive developmental disorders, so there is no reason to make the confusion. They do note that PDD is used because it is consistent with the child’s records. They note that he has PDD and not autism, but this could be stating

    The Court states that PDD is not a diagnosis, but PDD-NOS is. So, why do they continue to use PDD?

    His pediatrician put “autism” in his records, but states this is not accurate, but Pervasive Developmental Delay is. Another pediatrician states that he has global developmental delays with autistic features, but not an ASD.

    Dr. Lopez’s diagnosis appears to conflict with the diagnosis given by Bailey’s pediatrician on 20 May 2004, who saddled Bailey’s condition with the generalized term “autism”;7 however, that pediatrician later acknowledged that use of the term autism was used merely as a simplification for non-medical school personnel, and that pervasive developmental delay “is the correct [i.e. technical] diagnosis.” Pet Ex. 35. Another pediatrician’s diagnosis noted that Bailey’s condition “seems to be a global developmental delay with autistic features as opposed to an actual autistic spectrum disorder.” Pet. Ex. 30 at 4.

    Anyone who calls this a slam-dunk for the court recognizing vaccines cause autism is stretching things quite a bit.

    That said, I don’t think the Court is so clear in saying vaccines can’t cause autism. Nor should they. The court is there to take each case and each theory on its own. They have said definitively that the MMR theory of Dr. Wakefield is nonsense (non legal term there). My guess is that thimerosal is about to meet the same fate. Other theories may arise, and the court will consider them as they do.

    The chief special master noted that they have granted awards for vaccine injury that includes compensation for conditions that fall under the “broad rubric” of autism. This was before they had a better understanding of autism.

    I think also people need to keep in mind that the court is deciding whether autism is a vaccine injury in and of itself. That is, can one say, “my kid showed the first signs of autism 3 weeks after his MMR. Therefore the autism is a vaccine injury”. That is likely never going to happen.

53. 
    Emily
    September 27th, 2009
    00:38:05

    Wow. Did you just throw multiple sclerosis, a neurodegenerative disease, into the same pot as autism and then try to use it against me? Nonsensical, to say the least. You’ll stoop to any low, apparently. Yes, I face disability of my own. But I don’t whine about it. And since vaccines didn’t cause it and likely the onset was a combination of my own grandmother and EBV that I had in 2006, no, I’m not angry. I guess I could try to track down the person who didn’t wash their hands or whatever it was that allowed the EBV to get to me, but Lord wouldn’t that be a waste of time. I guess I could go roll my grandmother down a hill without her brakes, but that wouldn’t be very nice either, now would it?

    If you’d really bothered to read my blog (more than the post I just wrote today, one of a handful about my own disability among hundreds about my children), you’d know that it’s always about my children. Always. Even my concerns with MS are about what I may not be able to do with my kids any more.

    I know narcissists quite well, and around our house, we don’t feed the narcissists. It’s a little rule we have. Yes, I use “I” in my blog because I write in the first person. But if you have so little insight as to be unable to discern the difference between my writing with care and concern and love and insight and acceptance and understanding about my children vs. the vitriolic self pity that smothers threads like this in nonsense, then you’re simply confirming my suspicions. That’s all.

54. 
    Synesthesia
    September 27th, 2009
    00:41:37

    That bensmyson person is annoying me.
    Perhaps we should ignore him/her?
    That person seems like an impolite troll, comparing autism to rape and MS going from rude to polite and back to rude again.
    Time to ignore.

    I’m sorry you’re going through that, Emily.

55. 
    Emily
    September 27th, 2009
    00:48:34

    Oh, and not that most people reading here care, but I can’t pass up the inherent assumption in “sorry your life sucks.” My life doesn’t suck at all. I love my life. Love it. We have wonderful children, my husband means to me beyond any words I can find to describe, I love my work, we have great friends, unquestioningly supportive and understanding family…it’s a wonderful life—we laugh and love around here every day. I couldn’t and I don’t ask for more.

    And I do embrace whatever it brings me. I try to process it and then deal with it as realistically and with as much grace as I can. Admitting to a few days of fear before a significant specialist appointment doesn’t negate the fact that I live in today and I accept what today brings me.

56. 
    Synesthesia
    September 27th, 2009
    00:50:11

    What an excellent awesome attitude.

57. 
    bensmyson
    September 27th, 2009
    01:11:14

    Emily I assumed that anyone with with your worries about your own health must constantly be run down and depressed even though you must find some comfort in the fact that 50% of all those living in the industrialized world have at one time been infected with the Epstein-Barr virus (EBV). Hoping that your fears of MS will be found to be unwarranted.

58. 
    Clay
    September 27th, 2009
    01:11:37

    It is so tiring to read the rampant ignorance of Bensmyson and FW2. It makes me feel like I’ve worked all day at some very difficult task, only to turn around and find that someone has undone it all. I wish there were a vaccination against stupidity. I sure would make THAT one mandatory!

59. 
    bensmyson
    September 27th, 2009
    01:17:03

    Sullivan, PDD is autism, it isn’t anything else. It’s the umbrella.

    Again I’m not smart enough to know anything for certain other than what I witnessed and what I was told by a Board Member of the AAP who examined my son. True regressive form of autism, “Can not rule out vaccines as cause”

    But I realize there is no stone somewhere with carvings in it that state with God-like authority that vaccines cause autism. I understand that, that’s why I say my son had a brain injury that was caused by vaccines. The brain injury presents with characteristics of autism.

60. 
    Emily
    September 27th, 2009
    01:19:03

    Spinal cord lesions are not a “fear of MS.” They are MS. My EBV wasn’t simply an exposure; it was a six-week immobilization that accompanied a miscarriage. But thanks oh-so much for your hopes and other crap on my behalf.

    Clay, tiring, indeed. But I’m pleased to have further reminders of why I appreciate my husband so much for being the kind of man he is.

    Back to this regularly scheduled blog. I have nothing else personal to discuss. I like what Sullivan wrote, and I agree with it. I find heroism in my children’s bravery every day.

61. 
    Joseph
    September 27th, 2009
    01:40:39

    I understand that, that’s why I say my son had a brain injury that was caused by vaccines.

    If I’m understanding what you said correctly, the only reason you think your son is vaccine injured is because a pediatrician once told you that he has “true regressive autism.” Is that right?

62. 
    bensmyson
    September 27th, 2009
    01:53:04

    From Clay’s blog: “You’ve (Autism Speaks) done nothing for us, except to paint us as soul-stealing monsters, children who cause divorces and bankruptcy, useless wretches who can only drain the national economy.”

    Perhaps if you looked as autism being something other than yourself, sort of how MS or EBV does not define a person, you might grasp what the video was about. You are not autism. The title “I Am Autism” is the devilish voice heard in the first half of the video, he is autism, not you, not any of the people in the video. It really is a simple video about a devil’s bravado and scary, threatening championship wrestling, fake tough guy rhetoric facing a devil and Daniel Webster sort of character(s) who refuse to give in and accept the devils challenges head on. It is a metaphor for the struggle we as parents have fighting autism. I guess if you don’t fight it you don’t get it.

63. 
    Joseph
    September 27th, 2009
    02:04:48

    Perhaps if you looked as autism being something other than yourself, sort of how MS or EBV does not define a person, you might grasp what the video was about.

    You don’t get why that is? Autism is not a broken foot. It’s actually a key part of someone’s personhood, which drives how they behave, what they like and don’t like, etc.

    In that sense, it’s more like homosexuality or race. Would you tell a homosexual that they just need to start looking at homosexuality as something separate from themselves, and that way they won’t mind so much what people say about ‘homosexuality’, a thing that is separate from people. Why wouldn’t this make sense?

64. 
    Kwombles
    September 27th, 2009
    02:09:40

    Wow,Bensmyson, you win. You win the complete martyr/ass award of the week. Seriously. Kudos.

    Everytime I think you hit maximum density for complete offensiveness, you take it one notch further.

    You know what, there are tens of thousands of parents with children with autism who bust their asses everyday to help their children achieve their potential and they do it without making martyrs or asses of themselves. They do it with love and compassion and respect for their children. They do it without believing that vaccines did it. They do it without demonizing the condition or the child. They do it without whining about what it’s cost them or taken from them. They do it with grace. And without going down every damn woo trail out there. You have some serious problems.

65. 
    Emily
    September 27th, 2009
    02:11:29

    What doesn’t seem to be clear in your consistent attempts to drag this into the discussion is that autism is a developmental difference or disorder, one that pervades the development of the nervous system (PDD, anyone?) and influences its very architecture. A neurodegenerative disease like MS is inflicted on an existing construct, involves a specific tissue, the myelin, and is not comparable in any way to autism. People are autistic because their “pack of neurons” (apologies to Francis Crick) is different from other people’s packs of neurons, something that we all developed as we developed. It is not a neurodegenerative disorder like MS or ALS or PLS and is not comparable.

    Clay has a right to speak for autistic people, as an autistic person. And he has a right to find the “metaphor” of autism as a demon that destroys people’s lives offensive because he is autistic, he is autism. Just because he or someone else who is autistic doesn’t fit another’s personal experience of autism doesn’t make it any less so.

    There is no intention from what I can see on anyone’s part to diminish the real and sometimes damaging struggles of parents of children with autism. But the presentation of these struggles should be considerate of everyone involved. Autism Speaks must be aware by now, clearly aware, that actual autistics take issue with these kinds of presentations, yet they can’t give the very people for whom they claim to speak the respect that they deserve. There were myriad ways to present the struggle of parents in these situations and encourage donations without demonizing autism itself, which is inextricable from the people who are autistic (see above in re: developmental architecture). The fact that Autism Speaks persists in this tactic is disturbing to me. And I’m sure it would disturb my autistic son were he to see it.

66. 
    Clay
    September 27th, 2009
    02:12:30

    If you’d read more of my blog, you’d know that I’ve been autistic for over 63 years. Your son is autistic. Get over yourself. Autism Speaks does not speak for me!

67. 
    dr treg
    September 27th, 2009
    02:22:33

    “A neurodegenerative disease like MS is inflicted on an existing construct, involves a specific tissue, the myelin, and is not comparable in any way to autism. People are autistic because their “pack of neurons” (apologies to Francis Crick) is different from other people’s packs of neurons, something that we all developed as we developed. It is not a neurodegenerative disorder like MS or ALS or PLS and is not comparable.”

    MS, autism and most psychiatric diseases have demonstrable immunological abnormalities. It is just that MS primarily affects axons, and autism primarily affects dendrites and their spines.

68. 
    bensmyson
    September 27th, 2009
    02:28:37

    Joseph when a pediatrician that serves on the board of the American Academy of Pediatrics tells you that your son’s autism may be caused by vaccines then guess what, that’s pretty huge. But no, that’s not the only one, there are his DAN doctors that I hesitate to bring up due to the historical hate on this site regarding anything that has anything to do with fighting autism.

    But as I said in, I believe my first post, MY science is in the fact that I witnessed, immediately after my son’s 8 vaccines, that he not only failed to thrive, he regressed, lost everything. He was initially diagnosed with having encephalitis “most likely caused by a virus”, he had just recovered from Roseola, a HPV, and his immune system was compromised because of it. He was given the vaccines anyway, one group of vaccines administered, an MMRV, called ProQuad and manufactured by Merck, came into the news the same month due to the Pennsylvania plant, where the vaccine was made, being shut down by the FDA due to contamination, inaccurate measuring equipment and the release of a study that showed ProQuad to cause twice as many seizures as separate MMR and the Varicella (Chickenpox) vaccine. Merck pulled ProQuad from the shelves and it has not been marketed in the US since. In November of 08 Merck themselves filed a VAERS report regarding three deaths that were said to be caused by their own MMRV vaccine ProQuad.

    I’ve already said that my son’s brain injury was caused by vaccines, I saw it happen. His injury presents itself with the characteristics of autism. How you or your kids became brain injured I don’t know, could be a combination of things, including as in my son’s case, vaccines on top of a pre-existing compromised immune system.

    Let me ask you Joseph, what do you know about my son’s injury? And do you honestly think I got this rabid about autism on a hunch? On one doctor’s opinion? Or as Emily has suggested because I’m so vain? Pretty soon someone is going to come out and suggest that I’m a “refrigerator mom”.

    And all of you ask yourselves this question, if vaccines can kill, why is it everyone says that they are safe? I say it is the same reason no one wants to admit that vaccines cause autism. Vaccines save more lives than they destroy. The benefits outweigh the collateral damage, always will in a war, and greed.

69. 
    Kylie
    September 27th, 2009
    02:39:06

    Thanks for sharing on your blog Emily.
    BenMySon… Surely your arm is getting tired by now. All those pats on the back must be causing severe strain.

70. 
    bensmyson
    September 27th, 2009
    02:43:19

    Kwombles – You know what, there are tens of thousands of parents with children with autism who bust their asses everyday to help their children achieve their potential and they do it without making martyrs or asses of themselves.

    There are a million and a half people in the US suffering from autism, it wouldn’t surprise me if “tens of thousands” of parents do a great job working with their kids quietly and to themselves.

    You know what, I’ve only been at this a couple of years, maybe if I am still at this 10 years from now I might give up too. Until then I’ll continue to fight autism.

    There is a difference, getting your kid to speech therapy or to a play group when you need to be working and all is one thing, trying to defeat autism is another. Both parents could be considered doing their job. But to me its sort of like finding evidence of a rat being in your house, one homeowner keeps the place clean, the other gets a cat. Both are doing their job.

71. 
    kathleen
    September 27th, 2009
    02:54:58

    I too agree with what Sullivan wrote. I don’t see the video as a “metaphor for the struggle we as parents have fighting autism.” But that quote does sum it up for many-this video is all about the the parents-and not about the people with autism. Not at all.
    Three of my kids have autism..I am not a warrior-I am a mother…and mother trumps warrior every time. As a parent, I do all that I can to help my kids. Thats my job. It is also my privledge. I honestly don’t understand what “fighting autism” means anyway. We work hard with our kids-all of them. My kids work harder. This video does not respect them-speak for them-or represent my thoughts at all.

72. 
    Ali
    September 27th, 2009
    02:58:11

    Bensmyson, you keep using the word “science” but I don’t think you have any concept or appreciation for what that word means.

73. 
    bensmyson
    September 27th, 2009
    03:00:18

    Kylie interesting story, sort of relates to your comment. A few years ago in a small town in North Carolina, a woman awakes on her sofa to find her house on fire. Smoke pouring from the upstairs, her 4 year old daughter screaming at the top of the stairs calling her mommy to come rescue her, her 2 year old son screaming behind the closed doors of his bedroom just off the stairs. She attempted to climb the stairs but it was too hot, the fire and smoke too much to handle, she came back down stairs and left the house, leaving her daughter and son in the house. Surely she could hear their screams, yet she waited for the firetruck to come save her babies.

    The daughter survived, the son died. No one could believe this woman did not brave the fire to rescue her children so they arrested her for arson and for killing her son. It didn’t make sense to anyone that a mother would not do that, would not die trying. It wasn’t about heroics, it was about what a mother is supposed to do. http://www.truthinjustice.org/home1.htm

    There are no pats on the back, we just don’t mind smelling a little like smoke is all.

74. 
    kathleen
    September 27th, 2009
    03:02:22

    @bensmyson ” a million and a half people suffering from autism”
    My kids aren’t suffering…

75. 
    bensmyson
    September 27th, 2009
    03:03:32

    Main Entry: sci·ence
    Pronunciation: ?s?-?n(t)s
    Function: noun
    Etymology: Middle English, from Anglo-French, from Latin scientia, from scient-, sciens having knowledge, from present participle of scire to know; perhaps akin to Sanskrit chyati he cuts off, Latin scindere to split — more at shed
    Date: 14th century

    1 : the state of knowing : knowledge as distinguished from ignorance or misunderstanding
    2 a : a department of systematized knowledge as an object of study b : something (as a sport or technique) that may be studied or learned like systematized knowledge
    3 a : knowledge or a system of knowledge covering general truths or the operation of general laws especially as obtained and tested through scientific method b : such knowledge or such a system of knowledge concerned with the physical world and its phenomena : natural science
    4 : a system or method reconciling practical ends with scientific laws

76. 
    Ali
    September 27th, 2009
    03:06:27

    Posting a dictionary entry is the lowest form of defense and shows you have little real understanding of the world or how it functions. I agree with Emily: you are a consummate narcissist. Your trolling is obnoxious.

77. 
    bensmyson
    September 27th, 2009
    03:18:52

    Kathleen, good to hear your kids are happpy, my son suffers a little, just a bit, he becomes extremely angry when he can’t communicate to me exactly why it is he wants to watch a Thomas the Train 24 hours a day. He finds it hard to fend off fevers and coughs so he usually has one or both at any given time. If he didnt have to crap 3 or 4 times a day he might have more time to watch Thomas on Tv, that might make him suffer a bit. He freaks out when something is out of order, has no concept of “wait and I will fix it” won’t touch real food but will stick any leaf or plant or bug or something that looks like a leaf, plant or bug into his mouth. When he can communicate better he might be able to tell me how bad his head hurts, or how his stomach cramps make him act out violently. Hopefully when he is able to sleep longer than 3 hours in a stretch without wanting to get out of bed and start his day, he might not be so irritable when I fall asleep on the floor beside him at 4 AM, hitting me in the face with a shoe. That’s a couple of things, the rest of it I’m sure I will find out when he realizes he is not like the rest of the kids, when he has a suspicion that people make fun of him, when he is turned down for a job (Clay) or when he is shot or tasered because some cop mistook his refusal to take his hands out of his pocket as a threat. I guess you are one of the lucky ones I keep hearing about, how’s about that a pat on the back!

78. 
    bensmyson
    September 27th, 2009
    03:23:46

    Ali – Posting a dictionary entry is the lowest form of defense and shows you have little real understanding of the world or how it functions.

    You talking about my son or me? I mean one of my son’s problems is that he has little real understanding of the world or how it functions. The other is obnoxious people like you.

79. 
    Synesthesia
    September 27th, 2009
    03:25:06

    I really should ignore you and try to catch this katydid I let in that keeps making noise and kick it out (but it’s kind of cold outside) but, I don’t know about stuff like headaches and colds, and stomach problems. I got IBS so I have stomach problems all the time, migraines from grinding my teeth and the like, but the stuff like being made fun of for being different, not being able to get a job, and getting tasered…
    Isn’t that what neurodiversity is against and trying to prevent?
    I don’t see Autism Speaks making a video saying, “We need to create jobs for autistic people. And make sure that they get quality education and care, and we need to stop the use of aversives and restraint…
    No, instead you get that video… Which simply annoys a good deal of people.

    Now to ignore you again and wait for this katydid to chirp so I can know where it is.

80. 
    Ali
    September 27th, 2009
    03:27:55

    You talking about my son or me? I mean one of my son’s problems is that he has little real understanding of the world or how it functions. The other is obnoxious people like you.
    

    You.

    Heaven forbid an actual autistic person tell you that what you’re saying is offensive, poorly concieved, and has nothing to do with science. It would be unthinkable that someone with autism is aquainted with the ideas of privilege and derailing, and recognises your tactics for what they are and calls you on them. It certainly does make me obnoxious, not staying in my place like that!

81. 
    Emily
    September 27th, 2009
    03:28:55

    How old is Ben? His behavior sounds like my three-year-old’s behavior, except that he sleeps all night. He absolutely won’t eat most foods but will stick other weird things in his mouth, he wants to watch Charlie Brown’s The Great Pumpkin all day long and rolls around on the floor in a wall-eyed fit when he can’t; he has one URI after another; he pitches major, prolonged fits when things aren’t the way he wants them; and he throws things at us and at his brothers, sometimes for no apparent reason, sometimes because he’s pissed. I thought it was because he was three. Oh, and he refuses to “potty train,” outright, in spite of an obvious intellectual understanding of the proceedings.

    He had significant speech and motor delays, not speaking a word until 18 months, no eye contact, no interaction. He bites, hard, like a little feral animal sometimes. He was in OT from age 10 months and speech from age 17 months.

    He spiked two very high fevers before age 1 (up to 106) and had a febrile, vomiting UTI at age 11 months that hospitalized him.

    He is not autistic.

82. 
    bensmyson
    September 27th, 2009
    03:34:06

    Autism is my indoor katydid.

    I never said Autism Speaks is a group that I support or don’t find problems with. I find plenty of problems with that organization, some of which you brought up.

    I almost didn’t finish the video, the beginning reinforced my prejudicial feelings against AS. I watched it because I am a huge fan of the director, not because it has the Autism Speaks logo on it. (which I also find problematic)

83. 
    Synesthesia
    September 27th, 2009
    03:38:02

    I’m not going to SMASH this katydid.
    He can’t help that he makes a noise that is somewhat annoying (And funny)
    As it’s probably a very beautiful sound to him. He’s kind of cute… The poor thing was quite cold…

84. 
    bensmyson
    September 27th, 2009
    03:40:02

    Emily that’s awesome. Glad it’s not an issue, glad he isn’t suffering. Sounds sort of uncomfortable for him though, maybe just a tiny bit huh? Gee imagine all that with a diagnosis of autism though.

85. 
    bensmyson
    September 27th, 2009
    03:44:27

    So Synesthesia what’cha gonna do with him? Put him outside? Are they warm blooded? Maybe he will hibernate, I’m sure he will be ok. Yeah you don’t want to smash him… yet, just wait a few days. After a couple of months you will call in the exterminator. They are cute, little roaches that make loud noises.

86. 
    Synesthesia
    September 27th, 2009
    03:46:42

    Naw, it’s quite adorable. I probably will return it to my deck. It makes me squee happily and flap to see them crawl around out there…

    But Western Conifer Seed Bugs are less noisy.
    Giant moths and butterflies are especially not noisy and super cute.
    Though not very bright.

87. 
    randomguy
    September 27th, 2009
    03:55:46

    I have sympathy for bensmyson and everyone else whose life is made harder by autism but it sounds to me like at best, bensmyson has a child with symptoms of autism and not actually a case of classical autism. I don’t know if the things she says are true, but if that is the case, i dont think it is really fair for her to judge other people with more typical presentations of autism, or vice versa.

88. 
    kathleen
    September 27th, 2009
    04:01:36

    @ Bensmyson-my kids are lucky??...Because They are loved and appreciated for who they are?? I am certainly not going to get into a “my kids autism is worse than yours” argument. That is a load of crap, Which I believed you were already called out on earlier. You do make an awful lot of assumptions..
    Demonizing autism and autistic people-which this film does..perpetuates the myth that somehow my children, your son…anyone else with autism is somehow less or not valid. The very things you say that you worry about your son facing.

89. 
    Emily
    September 27th, 2009
    04:04:31

    I think bensmyson is a man.

    So, how old is Ben? You didn’t answer.

90. 
    bensmyson
    September 27th, 2009
    04:17:58

    My son is on the borderline. Two doctors have released him from the label. Three still say he has autism, one gives him a 50/50 chance at an independent life as an adult. To me, in my house, he is perfect. I’m highly competitive, if you haven’t noticed I like a challenge, I recognize that all children present their parents with opportunities of various challenges. But Ben is different than he was, he had a brain injury and that changed things. We have made it our life’s work to get him back. “I Am Autism” may not be anything you can identify with and it may even be offensive to you for one reason or another, but it speaks for me, to me autism is evil, and I’m not talking about a person or “autistics”, I’m talking about autism. I’m talking about what caused my son to be diagnosed with autism. I’m talking about something that one in 100 people are facing when it used to be one in 10,000 when I was a kid.

    They say the way you can tell if someone is crazy is because they deny the possibility of them being crazy. I think there is a good deal of truth to that. I know I’m crazy, to me it’s only natural.

    Good night.

91. 
    kathleen
    September 27th, 2009
    04:27:29

    Don’t know why-but my last comment didn’t post..Bensmyson-what do you mean that I am one of the lucky ones? I certainly am not going to engage in a debate about which kid struggles more than the other. That serves no purpose, is based on assumption, and is frankly, weird.
    You made a statement saying that a million and a half people are suffering with autism. I said that my kids don’t suffer. In which you responded that I was one of the lucky ones…then you wrote a list of what your son does..what on earth for? I stated that I had three kids with autism-it is not like I don’t understand..So what did you mean?

92. 
    Joseph
    September 27th, 2009
    05:29:45

    I’m talking about something that one in 100 people are facing when it used to be one in 10,000 when I was a kid.

    So I take it you don’t understand why this is false, Bensmyson?

93. 
    Sullivan
    September 27th, 2009
    07:16:11

    “Sullivan, PDD is autism, it isn’t anything else. It’s the umbrella.”

    Not accurate on two counts.

    Autism is one of the Pervasive Developmental Disorders. Childhood Degenerative Disorder is also a Pervasive Developmental Disorder. Retts Syndrome is also a Pervasive Developmental Disorder. Neither CDD nor Retts are autism. PDD is not autism. Autism is a PDD, but that is logically a different thing.

    The Special Master went to some length to refer to the condition as a Pervasive Developmental Delay. Why the SM did that is very confusing to me, but it is what the SM did. It is clearly not a mistake. The special master wrote the title of the decision as “non autistic developmental delay”. Again, clearly not a mistake.

    I actually wish you well on your legal quest. If your child is truly vaccine injured, we as a society need to step up to the plate and support that child for life. The label that gets attached to the injury is secondary.

    But I realize there is no stone somewhere with carvings in it that state with God-like authority that vaccines cause autism. I understand that, that’s why I say my son had a brain injury that was caused by vaccines. The brain injury presents with characteristics of autism.

    Actually, you don’t understand. The reason why autism isn’t compensated as a vaccine injury is that there is no proof that autism is a direct vaccine injury. Autism has a multitude of presentations and a multitude of causes. Autism will never be a table injury. It was never possible to say, “my kid has autism, therefore he/she is vaccine injured”.

    If you look back in the posts here you will see where I point out that the vaccine-autism crowd needs to take stock of the reality of their situation and act accordingly.

    this isn’t about gaming the system, trying to figure out the special masters won’t accept. It’s about being right. It is about making a case that is defensible. Cases based on an “epidemic” aren’t defensible. Cases based on the idea that thimerosal causes a “novel form” of mercury poisoning aren’t defensible. Cases based on the idea that the measles virus persists in the guts and somehow a causes autism aren’t defensible.

    It isn’t because there is some grand conspiracy. It’s because the theories so far are just wrong. Wakefield was wrong. Sallie Bernard, Mark Blaxill and the rest were wrong.

    The special masters have actually been lenient in the past on autism cases. In one case, a child with tuberous sclerosis was granted compensation for autistm. Since TS is a known risk factor for autism, this was a pretty weak case, in my opinion.

    If vaccines cause autism, it is in a very small subset and it is through mechanisms not yet explained. Stop trying to “wag the dog”. Stop acting like you are the autism community. Stop trying to lead and start asking for help.

    People like Kev, Prometheus, Joseph and many others have been offering help for many years—they’ve been countering misinformation. Sorry for the “I told you so” moment, but these guys have been telling you for years that the MMR and Thimerosal causation theories were wrong. They’ve been saying that the epidemic was unsupported by facts. The fact of the matter is, the Omnibus attorneys went ahead with causation theories that were obviously wrong to laymen. Of course they lost. Heck, even one attorney/parent pulled his kid out at the last moment. These ideas were clearly wrong.

    You can try to game the system, or you can read the words of people who have spent a lot of time taking apart the arguments that go into the vaccines-cause-autism theories. A smart person, a really competitive person, would understand those arguments before going to court. I hate to say it, but a smart person would never have gone forward with the Wakefield/MMR theory. Even though the thimerosal decisions aren’t out, I’ll say the same for that theory. There just wasn’t any substance to those arguments.

    As I said, if your child is truly vaccine injured, I hope you win your case. I wish that the compensation levels were higher. I think that increasing the amount (especially the $250,000 cap on pain and suffering) is just.

94. 
    Sullivan
    September 27th, 2009
    07:17:29

    @bensmyson ” a million and a half people suffering from autism”
    My kids aren’t suffering…

    1.5 million autistics in the US also implies a prevalence of about 1 in 200. Hard to reconcile that with the idea that the prevalence in adults is 1 in 10,000.

95. 
    David N. Andrews M. Ed. (Distinction)
    September 27th, 2009
    12:55:09

    BMS: “Sullivan, PDD is autism, it isn’t anything else. It’s the umbrella.”

    I SO have to respond to this. PDD is not one thing, not is it even a thing (as such): it is a group of diagnostic categories – a set of categories under which diagnoses are made. Under the PDD group of diagnostic categories, you find the categories you mentioned, and here they are as you mentioned them:
    ————————————————————————299.00 Autistic Disorder
    299.80 Pervasive Developmental Disorder, Not Otherwise Specified
    299.80 Asperger’s Disorder
    299.80 Rett’s Disorder
    299.10 Childhood Disintegrative Disorder————————————————————————
    The specifiers in that list are wrong, even if DSM has them as 299.80 for all of AS, RS and PPD-NOS. Given the reason for coding in the first place, this anomaly guarantees confusion in the statistics that get collected. This is why I use ICD 10 criteria (which DSM always follows, rather than leads); watch what happens here:

    F84 Pervasive developmental disorders
    F84.0 Childhood autism
    F84.1 Atypical autism
    F84.2 Rett’s syndrome
    F84.3 Other childhood disintegrative disorder (includes: Heller’s syndrome, but not Rett’s syndrome)
    F84.4 Overactive disorder associated with mental retardation and stereotyped movements
    F84.5 Asperger’s syndrome
    F84.8 Other pervasive developmental disorders
    F84.9 Pervasive developmental disorder, unspecified

    The whole of F84 is a set of so-called ‘pervasive developmental disorders’, not all of which are in the set of so-called ‘autism spectrum disorders’ (itself being what is mathematically known as a proper subset of the PDD set). The set of so-called ‘autism spectrum disorders’ definitely includes F84.0, F84.1 and F84.5; although they share some behavioural characteristics of conditions on the autism spectrum, F84.2 and F84.3 are not technically in the ASD set, belonging instead to a set of ‘childhood degenerative disorders’. This is because their natural histories differ from those of the autism spectrum, in which the developmental trajectory is atypical pretty much from birth, whereas they are definite onsets after very typical development. This is not to say they are of no concern: this is to say that they are not on the autism spectrum.

    BMS, if you think that your son’s development was entirely normal until vaccination, then this may interest you:

    F84.3 – Heller’s syndrome (quoting from ICD 10)-
    “A type of pervasive developmental disorder that is defined by a period of entirely normal development before the onset of the disorder, followed by a definite loss of previously acquired skills in several areas of development over the course of a few months. Typically, this is accompanied by a general loss of interest in the environment, by stereotyped, repetitive motor mannerisms, and by autistic-like abnormalities in social interaction and communication. In some cases the disorder can be shown to be due to some associated encephalopathy but the diagnosis should be made on the behavioural features.”

    You may be interested to know this aspect of aetiological considerations about F84.3:

    “Childhood disintegrative disorder (another name for Heller’s syndrome) has also been associated with … (s)ubacute sclerosing panencephalitis.”

    SSP is an organic inflamation of the brain tissue brought about by a “chronic infection of the brain is caused by a form of the measles virus that results in brain inflammation and the death of nerve cells”.

    This is not to say that HS is brought about by the administration of the MMR vaccine (which contains inactivated measles virus), but that it involves a long-term infection of brain tissue by the virus. In this case, the virus may have been there, without causing measles but instead infecting the brain and causing cell death. It is unlikely that MMR vaccine would have caused what has derailed your son’s development (but you would do well to check with a paediatrician).

    I am a diagnostician (I trained as an educational psychologist, and we learn to diagnose developmental and learning difficulties above all else); and I can tell you that – unless a very thorough history is taken, it is easy to misdiagnose Heller’s syndrome as any one of the diagnoses on the autism spectrum.

    http://www.mayoclinic.com/heal.....er/DS00801

    The above site contains information on:

    *symptoms

    *causes

    *preparing-for-your-appointment

    *tests-and-diagnosis

    *treatments-and-drugs

    *alternative medicine

    *coping and support

    I hope you find these useful. In any case, if your son had a typical development for that part of his life before he was vaccinated, I can practically guarantee (because of the diagnostic categories as explained above) that your son is not autistic… what has affected his development is not an autism issue. I would recommend a reassessment with a paediatrician who knows a good bit about Heller’s syndrome (and they do differentiate between Heller’s syndrome and syndromes on the autism spectrum). Clearly they know about it at the Mayo Clinic, and I’d suggest them as your first port of call.

    Again, I hope this helps.

96. 
    bensmyson
    September 27th, 2009
    13:40:21

    Dr. Andrews, thank you for your diagnostic theory, actually at the beginning we were desperate for any diagnosis other than autism. Autism, as we understood it, is a life long disability. Anything, back then, would be better than that. So we asked about Heller’s syndrome and for some reason that escapes me now, he did not meet the criteria. I will ask for a reassessment.

97. 
    bensmyson
    September 27th, 2009
    13:54:31

    Sullivan, thank you for taking the time to attempt to correct me over legal wording that proves or disproves whether or not some particular cases presented to a panel of “judges” were vaccine injuries or not.

    My son’s case is not entered in the Vaccine Court, never will. To win Ben would have to go thru many invasive procedures and even if we do it the odds are about the same as a snowball’s chance in hell, I’d rather buy a lottery ticket if it was about money. We know what happened, barring a diagnosis of Heller’s syndrome our son’s injury was directly related to his vaccines.

    Time will tell, my work is not about vaccines anyway, it is about awareness and hope for my son. It’s a selfish thing, all about me and mine and joining hands with others that are doing the same thing for their child. My biggest ally in my fight for insurance is a woman that is as hard core as you guys. We are friends. We just don’t talk about cause. She does cut me some slack because she recognizes Ben’s regression, her son seems to have been born with autism.

98. 
    Joseph
    September 27th, 2009
    14:16:57

    We know what happened, barring a diagnosis of Heller’s syndrome our son’s injury was directly related to his vaccines.

    What is the basis of your assertion, bensmyson? I probably missed it if you explained previously.

99. 
    David N. Andrews M. Ed., C. P. S. E.
    September 27th, 2009
    14:19:02

    “Dr. Andrews,”

    blush

    Not Dr yet … I have done some post-graduate (actually post-magisterial) work on autism at a Finnish polytechnic and so I have a CPSE - Certificate of Professional Studies in Education. But no Ph. D., at least not yet.

    “thank you for your diagnostic theory,”

    Welcome.

    “actually at the beginning we were desperate for any diagnosis other than autism. Autism, as we understood it, is a life long disability.”

    Lifelong, yes; and part of a situation that can very much lead to disability, yes.

    “Anything, back then, would be better than that.”

    This I’d disagree with… I’m sure that my dad would have preferred his ‘autistoid’ characteristics diagnosed as something on the autism spectrum rather than have the lump in his back diagnosed as cancer. The cancer is what killed him.

    “So we asked about Heller’s syndrome and for some reason that escapes me now, he did not meet the criteria.”

    That certainly surprises me, to be honest. Not saying you’re lying… I’m saying that the situation cannot have been considered properly by the medical practitioner you consulted.

    “I will ask for a reassessment.”

    I certainly would recommend it. And I’d suggest that you ask at the Mayo … I’m sure they’d be willing to answer an initial query based on your description of Ben’s pre-vaccination development. Their site will give you all the help you’d need in preparing this description.

    And thank you for your rather quick and civil response. You evidently took my post in the spirit that it was meant, and I hope that you can get things cleared up as to what is going on with Ben. My main point is that – whatever it is – it should be diagnosed correctly. That way, you get better and more accurate knowledge and information about what is going on and then what you can realistically do about it, if that makes any sense. I say that it’s unlikely that HS is caused by the MMR vaccine’s inactive measles virus, but … unlikely is not impossible, if you see what I mean. The science on mercury and autism is clear: mercury does not cause autism. But if there is even the slightest chance that the measles vaccine has caused such a dramatic change in your son’s development, then that is an issue that is going to need some financial support for the rest of his life, and this is why I’m telling you this. I can’t understand why Ben’s development would be seen as not fulfilling the HS criteria… from what you have said already it is clear that it fits that category far better than it does the autism spectrum categories. As the Mayo Clinic site says:

    “Childhood disintegrative disorder is a condition in which children develop normally until age 3 or 4, but then demonstrate a severe loss of social, communication and other skills.

    Doctors sometimes confuse this disorder with late-onset autism.”

    I’ll put these here so that anyone can see them and compare for themselves… from the Mayo Clinic site-
    —————————————————————Normal development for at least the first two years of life
    This includes normal development of age-appropriate verbal and nonverbal communication, social relationships, and motor, play and self-care skills.

    Significant loss of previously acquired or learned skills (my note: this is the section of the classification criteria that clinches the differential diagnosis in favour of Heller’s syndrome)
    This loss occurs before age 10, in at least two of the following areas:

    • Ability to say words or sentences (expressive language)
    • Ability to understand verbal and nonverbal communication (receptive language)
    • Social skills and self-care skills (adaptive behavior)
    • Bowel and bladder control
    • Play skills
    • Motor skills (ability to voluntarily move the body in a purposeful way)

    Lack of normal function or impairment
    This lack or impairment occurs in at least two of the following areas:

    • Social interaction. This may include impairment in nonverbal behaviors, failure to develop peer relationships, and lack of social or emotional reciprocity — an inability to share, recognize, understand and respond to social cues and interactions or to feelings of others.
    • Communication. This may include delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, and lack of varied imaginative or make-believe play.
    • Repetitive and stereotyped patterns of behavior, interests and activities. This may include hand flapping, rocking, spinning (motor stereotypes and mannerisms); development of specific routines and rituals; difficulty with transitions or changes in routine; maintaining a fixed posture or body position (catatonia); and preoccupation with certain objects or activities.

    Loss of developmental milestones may occur abruptly over the course of days to weeks or gradually over an extended period of time.—————————————————————
    Now, you can check Ben’s development against that set of criteria and see if the medical practitioner who said ‘No’ was actually right.

100. 
     bensmyson
     September 27th, 2009
     15:42:51

     I will have to say that on a quick study there seems to be a check mark beside many of the above. However, these items checked could also be typical characteristics of autism. The one thing that is a question is the motor skills. He was an early walker, and could get into most anything and everything, twisting the cap off of water bottles we would leave about half full, that was particularly frustrating for us, but even now he has trouble unscrewing a bottle cap. It has only been this past month or two that he can intentionally stick his tongue out. He rarely uses his his pincher grasps, prefers to scoop up an item. Has difficulty threading a string through beads. But can climb, jump, stand on one foot, reach, use a tool, stack blocks, and draw.

     Then there are play skills, I’m not too sure he was delayed here, when he was injured he wasn’t really old enough for us to recognize any problems, the doctors did but we argued, if you were to lay down beside him and mimic his play, he would mirror or parallel play. He also developed “theory of mind” or the ability to pretend pretty early on, using pieces of paper as airplanes or making it looked like dolls or stuffed animals walked by moving them in a way that resembled walking as he moved them about. Now of course it seems he lives in a play world most of the time, constantly involved in some play activity, in fact the way we could really reach him early on was to use his play, enter his world and work counting, or identifying letters etc within a play environment. Trying to sit him down (ABA) would shut him down and made it difficult to engage him. We now do a combination of both.

     2 years ago Ben was a shell of who he was, he seemed alone, frustrated and incapable of making a personal connection with anyone. He stopped speaking, stopped eating, stopped everything and replaced it with blank stares and periods of extreme anger and frustration. He has come along way since then. His last evaluation (2 months ago) we actually expected the doctor to say that he is no longer meeting the criteria for an autism diagnosis. We hoped he would say that. I guess we always will.

     We will find us someone to answer some questions about Heller’s syndrome and will check my notes to see if there is any mention of it. If there is anything to it I will owe you a pint. Either way it is extremely generous of you to take the time to show me one more footpath to poke my head down. Thanks.

101. 
     bensmyson
     September 27th, 2009
     16:35:54

     Spoke with a pediatrician friend of mine (lives 1,000 miles away) and asked her about HS, she said it is a difficult diagnosis to make when compared to the possibility of autism, particularly if the sudden changes happen at one year rather than on down the road where the more typical cases are discovered around 4 or even 5 years of age. She did say she knows very little about it and I should bring it up to one of the doctors treating him.

102. 
     Shanna
     September 27th, 2009
     17:14:13

     Bensmyson-Just curious, what were the signs of regression Ben expierenced? What was he able to do before a year that he lost? And how old is he now?

103. 
     randomguy
     September 27th, 2009
     17:21:36

     ok i couldn’t let this go.

     Bensmyson said “My son is on the borderline. Two doctors have released him from the label. Three still say he has autism, one gives him a 50/50 chance at an independent life as an adult.”

     You do realize that Autism is not an either or situation right? If your son is on the borderline, he has an excellent chance of leading high quality independent life. IF you truly believe your son has been brain damaged, it is incredibly lucky he is even alive.

104. 
     bensmyson
     September 27th, 2009
     17:30:10

     He was able to talk, to point to things he wanted, to respond to a command such as “go get the ball and bring it to daddy” he hummed, mimicked noises, songs, cow says moo, he made eye contact, said, “I love you” hugged, felt pain, ate most anything and everything, now its only beige and crunchy things, became aggressive, would turn if someone came into the room or follow if they left. He met and surpassed all milestones early. It all went away within a month, started with the lack of eye contact and the first thing to return was eye contact. We actually thought he had a hearing problem at first. He had had a extremely high fever and we thought that there may have been a possibility that his hearing was damaged by the fever. We knew nothing about autism. I was a psych major and even in a field study examined children with autism, severe autism, some wore helmets. Had no concept about the full spectrum.

     Ben is 3 and a half, he was diagnosed the first time at 16 months. No problems at birth, full term, normal sized head, height, weight in upper percentile. Pretty much anything you want to know about him is on our blog, http://bensmyson.wordpress.com

105. 
     Sullivan
     September 27th, 2009
     17:35:06

     If your son is on the borderline, he has an excellent chance of leading high quality independent life.

     You are assuming that autism is the only disability for this little guy. I don’t think that is accurate.

106. 
     randomguy
     September 27th, 2009
     17:42:06

     you are, right, misread the actual line, I retract my statement.

107. 
     bensmyson
     September 27th, 2009
     17:42:40

     Random, there is no mistaking that my son had a brain injury, the seizures, the fevers, the blood work, the loss of speech etc, every doctor said brain injury, that much is a fact. The rest, vaccines, viruses, etc is speculative, there is no proof, no way to get proof without boring a hole in his head or sticking a needle in his spine or pulling out tissue from his intestines which I refuse to do without it needed to be for a life saving reason.

     Ben’s first specialist that diagnosed him examined him a year later and the first words out of his mouth were, “You guys need to go pop a bottle of champagne, this is not the same little boy I saw last year.” and released him from his earlier diagnosis. We also saw a psychiatrist the same day and he diagnosed Ben as having autism. The second doctor is Ben’s regular pediatrician who remarked that he could not meet the criteria for autism and changed the diagnosis to “developmentally delayed” which actually is a better diagnosis for insurance purposes so maybe he did so to help him get paid, who knows.

108. 
     bensmyson
     September 27th, 2009
     17:50:52

     Shanna, Ben is 3 and a half, I posted a response earlier and it didn’t post for some reason. The short answer is that Ben met and exceeded all milestones, within 30 days of his vaccines he stopped talking, stopped making eye contact, stopped humming, singing, mimicing, stopped eating, spinning, tippy toes, stimming, stopped feeling pain, didn’t see him scratch an itch for over a year, never turned with someone came into a room, used to point to things he wanted, respond to command, “Go get the ball and bring it to daddy”. It all stopped. If you are seriously interested you can go to our blog for more of the specifics, http://bensmyson.wordpress.com

109. 
     Shanna
     September 27th, 2009
     19:18:45

     My son is 3 and a half as well. I am glad that you shared your blog with me. It always helps to put a human face on these comments. I am sure it must be hard to feel like your child has been ripped away from you. Our son’s now share many common similarities but they did not start out the same. My son never regressed. He never pointed, mimiced, talked, ect…he hasn’t changed. I do not feel a since of loss. I guess that is why I take it so personally when you talk about autism being so evil. For me, autism didn’t steal my son. He is the same beautiful boy I came home from the hospital with. Our son’s may share a common diagnosis but we view them very differently. I am sure you do not realize how hurtful your words can be. How I feel your disgust for autism is disgust for my precious son.

110. 
     bensmyson
     September 27th, 2009
     19:51:52

     Shanna, I do not see autism as a person, it is a diagnosis, a label. Autism is not who your son is, your son, my son, is much more than that.

     I refuse to call my son “Autistic”, perhaps when the world understands what “autistic” means then maybe autism will not cause my son to be identified with a label that could mean anything to Joe Six-pack. And thanks to various big mouth celebrities it more than likely now means a spoiled kid dragged from doctor to doctor demanding to know why their child isn’t a genius. I guess that’s why I like the video, it tells my story, I don’t want my son to be “autistic” I hate autism. It stole my son. But don’t get me wrong, I wouldn’t trade him in for anyone else, he watched 10 minutes of football with me just now without squirming or wanting me to change channels, it made my week, my little fellow sitting next to dad watching football. How awesome is that? I have no idea what life would be like had he not have suffered the injury, I suspect I am closer to him, have more of an imprint into his life and have a better marriage because of it, but who knows, it’s impossible to know.

     I do realize that you can not share my experience of loss, I suspect that it would have been easier on me had this been the other way around. Maybe or maybe not but I suspect that that’s the difference between us.

111. 
     Joseph
     September 27th, 2009
     20:09:41

     Shanna, I do not see autism as a person, it is a diagnosis, a label. Autism is not who your son is, your son, my son, is much more than that… I refuse to call my son “Autistic”

     That something is a label doesn’t mean that it can’t or shouldn’t be used as an adjective (what you call “a person” which is inaccurate.) For example, little people have dwarfism, but it’s not common practice to call them “persons with dwarfism.” Similarly, homosexuality is a label too, but gay people are not normally referred to as “persons with homosexuality.” Black people are not referred to as “persons with blackness” and it’s not because the color black is a person. Disabled people can be interchangeably referred to as persons with disability or disabled people. Etc.

     I’m thinking you’re just a person with ignorance, Bensmyson.

112. 
     bensmyson
     September 27th, 2009
     20:59:42

     Thanks for the bigoted label Joseph. Personally I feel the more accurate label is a person of a different opinion, otherwise we are all ignorant.

     Dwarfism is easy to recognize, as is the color black, it’s simple. And why would anyone say a person is gay or homosexual unless it is to label them as to someone’s sexual persuasion and why is that of any importance? Would you say, this person is straight, or asexual? Someone diagnosed with autism is not so easily defined. It could mean anything and usually does. My son’s injury is much more complex than what the term “autistic” defines him as.

113. 
     Clay
     September 27th, 2009
     21:00:25

     Nah, he’s not so bad. I just went and looked at his website. It’s a very touching story, and I began to understand a little bit, about his and his wife’s difficult journey. As for the “autistic” thing, some ideas just take awhile growing into, and it may be that Ben has Heller’s, as David pointed out. And he really doesn’t like Jenny McCarthy, so he can’t be all that bad! ;-)

114. 
     Shanna
     September 27th, 2009
     22:46:26

     Bensmyson-I am quite sure we are never going to see eye to eye on this matter. You can call your son what ever you choose. It is pretty insignificant in the grand scheme of things. I obviously realize that autism is not the only thing that defines my son. He has his own intrests and his own unique personality. Rather I think of autism as a community he belongs to. And I just see no purpose in tearing that community apart. There are strong, amazing, special people of all ages who belong to that community.

115. 
     bensmyson
     September 28th, 2009
     00:04:49

     Shanna you sold me on the community, I’m with you 100% on that.

116. 
     Anna Hayward
     September 28th, 2009
     20:48:10

     Maybe we should all drop the warrior analogy and learn some calm acceptance of what is and cannot be changed? I am Aspergers and I have two autistic children, one severely (albeit high functioning). I’ve been through the screaming, non-verbal child stage, which never seems to end (but it does); I’ve had a doubly incontinent 6 year old being uncooperative in the disabled bathrooms; and I’ve had the sleep deprivation – I could get a medal for that. Not to mention the full time job of advocating for my children. But that’s what you do when you’re a parent – its not heroic, its just what parents so. And my kids aren’t heroic, they’re just doing what they need to do.

     People with autism are people. No matter how low functioning, or how able and we deserve respect as equal human beings to everyone else. ‘Autism Speaks’ is not respectful and it reeks of bitterness and anger that life is not how it “ought” to be. Get over it. Life is hard for some, but you have enough to eat, you have a roof over your head… OK, so your kid is different. Its not the end of the world. Your kid just wants to be happy, just like you.

117. 
     kathleen
     September 28th, 2009
     21:13:38

     Well said Anna.

118. 
     bensmyson
     September 28th, 2009
     23:58:35

     “OK, so your kid is different. Its not the end of the world.”

     Good luck with that “different” thing.

     A guy walks up behind your son when he is a year old, swings a baseball bat and strikes your son square on the head, meant to do it or not makes no difference, your son falls to the ground, loses his ability to speak, he stops making eye contact, from that moment on he is brain injured, I mean different. Yeah that’s not the end of the world, your world at least.

119. 
     David N. Andrews M. Ed., C. P. S. E.
     September 29th, 2009
     00:07:16

     BMS: “Either way it is extremely generous of you to take the time to show me one more footpath to poke my head down. Thanks.”

     Welcome. Someone very nice and rich gave me a very nice scholarship to be able to do all this, and I feel that if I can do something to make things less confusing for someone then I should… sort of like that film, you know ‘Pass It On’. Someone does something good for me, so I should do something good for someone else, and hopefully that’s how it goes on.

     There’s some people on these blogs who – for some reason – come on and whinge and won’t be helped; some have seen you as such a person. I didn’t get that impression about you. I wish you all the very best in getting to the bottom of what has affected your son’s development. Way past my bedtime now… work in the morning … g’night :)

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