Why I don’t like “I am autism”

25 Sep

When the Autism Speaks “I am autism” video came out, I really didn’t like it. It was on such a primal level that I couldn’t put words to how much or why I found it offensive.

One problem with leaving my reasoning unsaid is that many people reach the wrong conclusions. I have read here and elsewhere complaints that people like myself who criticize “I am autism” don’t understand that it is about the most challenged (low functioning) autistics.

I would say that anyone who thinks “I am autism” is about the challenges of autistics (“high functioning” or “low functioning”) didn’t pay close attention to the video.

Here it is again. (and here is a transcript)

Of course, some people understood where I was coming from. Fellow parent, Monica, wrote in the comments:

My voice isn’t the one that matters when it comes to autism. It really does take an idiot not to get that. I think a lot of my role as a parent is shutting up and listening. Until I am able to be quiet long enough that I can understand what they are wanting/needing I have no business being anyone’s voice. That’s a lesson that Autism Speaks obviously hasn’t learned.

It has been said that most stories have three main elements: a villain, a victim and a hero. “I am autism” certainly uses this three-pronged plot device. Let’s take a look:

The Villain: Autism

Autism Speaks very clearly has cast “autism” as the villain. Autism has no morality. Autism doesn’t know right or wrong. Autism wants to steal our children and our dreams.

Autism is some sort of science fiction monster or demon who stalks our children.

The victims: Parents

Watch the video and ask: Who is affected by autism? If all we had was the video to go by, the answer would be simple: Parents. Autism takes money away from…parents. Autism ruins the marriages of…parents. When a child has a meltdown in a public place, a park or temple or birthday party, it is the parents who are embarrassed. The death of a parent is important in the fact that the parent dies worrying about who will take care of their child or children.

The heroes: Parents

Yes, the parents are cast in two roles, victims and heroes. OK, not just parents. Grandparents, brothers and sisters are also heroes. Teachers, therapists, pediatricians and scientists get supporting roles as heroes as well. 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?

First, autistics were given no voices in this video. It is all people speaking for autistics. Leaving autistics out is wrong on so many levels. Many, many levels. I could write the entire blog post on that one topic, and still have people pointing out things I missed.

Second, they still pose the discussion as primarily about children. There is at least one adult shown in the videos, but by far most of the video and voiceover is about children. Autism Speaks claims that there are 1.5 million autistics in the U.S. Perhaps it is time they acknowledged the 1.0 million adults and not just the half million children.

Third, I don’t like the victim device. No, I am not saying that autistics don’t face challenges, or that the challenges some face are very, very great. I am not in denial of that. I just don’t like victimizing the people you are purporting to help. It is paternalistic and it is counterproductive to many of the goals that are very important, like trying to help people live as independent a life as possible.

Which brings us to the fourth point:

Fourth, with apologies to my fellow parents, 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. If we are supposed to pity the parent who is embarrassed by their child in the park, how about some compassion for the child (or adult) undergoing the meltdown? We are supposed to feel the pain of the parent who wakes up crying wondering about “who will take care of my child after I die”. How about the autistic who will spend most of his/her life without a parent caregiver?

Who, really, is the hero? When will Autism Speaks get it that it is time to stop patting themselves on their own backs and start acknowledging the accomplishments of their children and the many autistics in the world. Autism Speaks could go a long way towards that by integrating their own organization with the very people they purport to represent: autistics. Get some autistics into Autism Speaks and start listening.

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

  1. Emily September 27, 2009 at 00:38 #

    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.

  2. Synesthesia September 27, 2009 at 00:41 #

    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.

  3. Emily September 27, 2009 at 00:48 #

    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.

  4. Synesthesia September 27, 2009 at 00:50 #

    What an excellent awesome attitude.

  5. bensmyson September 27, 2009 at 01:11 #

    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.

  6. Clay September 27, 2009 at 01:11 #

    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!

  7. bensmyson September 27, 2009 at 01:17 #

    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.

    • Sullivan September 27, 2009 at 07:16 #

      “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.

  8. Emily September 27, 2009 at 01:19 #

    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.

  9. Joseph September 27, 2009 at 01:40 #

    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?

  10. bensmyson September 27, 2009 at 01:53 #

    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.

  11. Joseph September 27, 2009 at 02:04 #

    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?

  12. Kwombles September 27, 2009 at 02:09 #

    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.

  13. Emily September 27, 2009 at 02:11 #

    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.

  14. Clay September 27, 2009 at 02:12 #

    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!

  15. dr treg September 27, 2009 at 02:22 #

    “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.

  16. bensmyson September 27, 2009 at 02:28 #

    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.

  17. Kylie September 27, 2009 at 02:39 #

    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.

  18. bensmyson September 27, 2009 at 02:43 #

    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.

  19. kathleen September 27, 2009 at 02:54 #

    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.

  20. Ali September 27, 2009 at 02:58 #

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

  21. bensmyson September 27, 2009 at 03:00 #

    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.

  22. kathleen September 27, 2009 at 03:02 #

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

    • Sullivan September 27, 2009 at 07:17 #

      @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.

  23. bensmyson September 27, 2009 at 03:03 #

    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

  24. Ali September 27, 2009 at 03:06 #

    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.

  25. bensmyson September 27, 2009 at 03:18 #

    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!

  26. bensmyson September 27, 2009 at 03:23 #

    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.

  27. Synesthesia September 27, 2009 at 03:25 #

    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.

  28. Ali September 27, 2009 at 03:27 #

    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.


    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!

  29. Emily September 27, 2009 at 03:28 #

    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.

  30. bensmyson September 27, 2009 at 03:34 #

    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)

  31. Synesthesia September 27, 2009 at 03:38 #

    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…

  32. bensmyson September 27, 2009 at 03:40 #

    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.

  33. bensmyson September 27, 2009 at 03:44 #

    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.

  34. Synesthesia September 27, 2009 at 03:46 #

    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.

  35. randomguy September 27, 2009 at 03:55 #

    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.

  36. kathleen September 27, 2009 at 04:01 #

    @ 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.

  37. Emily September 27, 2009 at 04:04 #

    I think bensmyson is a man.

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

  38. bensmyson September 27, 2009 at 04:17 #

    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.

  39. kathleen September 27, 2009 at 04:27 #

    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?

  40. Joseph September 27, 2009 at 05:29 #

    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?

  41. David N. Andrews M. Ed. (Distinction) September 27, 2009 at 12:55 #

    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.


    The above site contains information on:
    *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.

  42. bensmyson September 27, 2009 at 13:40 #

    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.

  43. bensmyson September 27, 2009 at 13:54 #

    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.

  44. Joseph September 27, 2009 at 14:16 #

    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.

  45. David N. Andrews M. Ed., C. P. S. E. September 27, 2009 at 14:19 #

    “Dr. Andrews,”


    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,”


    “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.

  46. bensmyson September 27, 2009 at 15:42 #

    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.

  47. bensmyson September 27, 2009 at 16:35 #

    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.

  48. Shanna September 27, 2009 at 17:14 #

    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?

  49. randomguy September 27, 2009 at 17:21 #

    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.

    • Sullivan September 27, 2009 at 17:35 #

      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.

  50. bensmyson September 27, 2009 at 17:30 #

    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

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