The ScienceBlogs Book Club

Framing Autism

Orac wrote about the need to devise frames that can “combat the likes of Jenny McCarthy” and to counter the highly misleading frames that are out there about vaccines, namely:

1) Autism as vaccine injury.
2) Vaccination as an assault on personal freedom.
3) “Green Our Vaccines” and its variant, “We are not ‘antivaccine'; we’re pro-safe vaccine.”
4) Too many too soon.

As the parent of an autistic son, and as someone who communicates regularly with lots of parents of autistic children and with lots of parents period, these are some reasons why people these days seem drawn to such misinformation about vaccines. (Many of the links that follow are to my blog.)

1) Parents hear about the rise in the prevalence rate of autism and vaccines provide a simple and straightforward explanation. Plus, vaccines are something that any parent of schoolage, and of college-age, children has to think about: In New Jersey where I live, children (like my son) entering sixth grade had to have two additional vaccines to enter school in the fall.
2) Parents feel a need to to have control, to have a parental right to choose to vaccinate or not.
3) Parents are hit by a call to “green everything” from cleaning products to lunchboxes so why not vaccines? (Though what “green our vaccines” means, no one knows.)
4) Changing the schedule of vaccines and having vaccines (like the MMR) given in single doses sounds like common sense to parents who’ve had to struggle to hang onto a crying (if not screaming) child–a baby–getting a shot. I still remember the very mixed feelings in my stomach when a nurse used his legs to hold my toddler son down on the examination table, to give Charlie a polio vaccine—these are precisely the images (holding a child down to get a shot that then is believed to “give” a child autism) that the antivaccinationists regularly deploy, to stoke people’s emotions (and it works).

Besides new frames for vaccines, we also need new frames for autism, that counter what those “false prophets” of autism have been saying. The National Autistic Society‘s Think Differently campaign sends out a positive message about autism; I exist is the message that autistic adults do, yes, exist, and that autism is not some disease of recent origin, as the antivaccinationists like to say it is. Some thoughts I’ve had for framing autism:

1) Autism is a neurodevelopmental disability.
2) Autism is lifelong; there are no cures for it. With appropriate education and services, autistic individuals can learn much and thrive in the community.
3), 4), 5)…….. [Yours to fill.]

We’ve heard so much from the “false prophets” of autism. It’s time to hear much more about autism that’s accurate, and true.

Comments

  1. #1 Thomas D. Taylor
    October 5, 2008

    People wanting to hear reliable facts about autism and vaccines are encouraged to listen to the free Autism Spectrum Podcasts entitled “Autism and Vaccines: parts I & II” issued by Midnight In Chicago at http://www.mic.mypodcast.com

    Summary: There is no scientific evidence that autism is caused by vaccines. Studies cited in this podcast provide more detailed information.

  2. #2 Kristjan Wager
    October 5, 2008

    Alternatively they could just read Offit’s book, where he also makes that clear.

    Sorry to sound so grumpy Thomas, but your comment implies that people won’t get reliable facts about autism and vaccinations here. While that might hold true for some of the comments, it certainly is not true for neither the book nor for the actual blog posts.

  3. #3 Regan
    October 5, 2008

    I don’t begrudge Thomas’ announcement. Definitely read the “Autism’s False Prophets”, read the blog posts, listen to the podcast now or later. The more sources putting forth good information, the better. It all makes a refreshing change from some of the misinformation that I have been seeing for too long in the public eye and on the internet.

    Thomas, I just listened to your podcast–I’m no expert, but it sounded good.

  4. #4 Felicia Gilljam
    October 5, 2008

    I still remember the very mixed feelings in my stomach when a nurse used his legs to hold my toddler son down on the examination table, to give Charlie a polio vaccine—these are precisely the images (holding a child down to get a shot that then is believed to “give” a child autism) that the antivaccinationists regularly deploy, to stoke people’s emotions (and it works).

    This might be extremely inappropriate to bring up in this discussion, but I was under the impression that most americans have their baby boys circumcised. So supposedly – according to this “argument” by the anti-vaxxers – it’s alright to strap children down and amputate a part of their body, but not hold them down for a quick poke with a needle?

    I really don’t get it. :S

  5. #5 Therese
    October 5, 2008

    I am really glad that this book has come out to dispel some of the myths that are so prevalent. I just don’t know how many of the people who believe them would be open to believing that that is what they are-myths.
    I think there are a lot of people who just need to find something or someone to blame, because they can’t accept that there is not a clear-cut “demon” causing autism. It can be easy to point the blame at something (like a vaccination) that is not easily understood, especially if there is already a bandwagon to hop on.
    I hope that through this book, blog and other discussions that the public will begin to understand the complexities of autism and its spectrum disorders.

  6. #6 Kristina
    October 5, 2008

    So how to get the antivaccinationists to actually read Dr. Offit’s book? There have been reviews of it (Age of Autism, Inside Autism: Our Culture and the Autism Epidemic) but these have not, or have yet to, really look at the book as a whole. They assume they know what the book says and offer comments that (and I write this as a former freshman writing instructor) indicate that they have not really read the book.

  7. #7 Danio
    October 5, 2008

    Another ‘frameworthy’ point, IMO: ‘we know that autism is a neurodevelopmental disorder. Studying the mechanisms of nervous system development will help us to understand what parts of this process occur differently in ASD children’.

    Another aspect of this frame could be to highlight the amount of time and money that has been funneled from legitimate autism research to examine and reexamine the vaccine-autism ‘link’, as well as the abandoned NCCAM chelation study. The millions wasted on this folly could have funded a brain research lab for a few years.

  8. #8 Kristina
    October 5, 2008

    Very good point; the anti-vaccinationists speak frequently about how much money is devoted to genetic studies that don’t have immediate results for treatment, and lament how “little” goes to funding for environmental causes. Another figure would be how much parents spend on biomedical tests, visits to biomed professionals, and supplements/special foods etc..

    This might be of interest too: It’s the NIH’s research portfolio for ASD.

    http://www.autismvox.com/nih-autism-spectrum-disorder-research-portfolio/

  9. #9 Phil Schwarz
    October 5, 2008

    I think a fundamental property of a good frame for autism is the distinction between autism per se, and handicap/disability/impairment concomitant with or secondary to autism.

    I have been working for 15 years, as a parent of an autistic child and as an adult on the spectrum myself, to educate people to make this distinction, because once it is made, there is so much more common ground — regarding mitigation of the handicaps/disabilitities/impairments — that the disparate elements of the “autism community” can agree upon and act upon.

    This fundamental distinction allows for common ground between, for example, parents of severely handicapped autistic children whose whole lives are focused upon the handicaps/disabilities/impairments and their mitigation, and parents of less handicapped autistic children who have begun to identify, along with the handicaps/disabilities/impairments, some uniquely autistic aspects of their children that they do not see the need to alter.

    Autism is *not* like cystic fibrosis, or muscular dystrophy, or cancer — the distinction I am talking about does not exist regarding them. It is high time we change the way we describe autism in the fundraising and publicity we do for autism organizations to reflect this distinction.

  10. #10 Joseph
    October 5, 2008

    So how to get the antivaccinationists to actually read Dr. Offit’s book?

    I don’t think it makes a difference. Their minds are set in stone. And they should be aware of much of this information already. The closest I’ve seen to cognitive dissonance kicking in was when Lenny Schafer was wondering where the whistleblowers of the Big Conspiracy(tm) might be. I think he soon forgot about that.

    That anti-vaxers themselves are not reachable. The new generations of parents are, though, as Kev pointed out. One problem is that each new generation brings new nonsense with it (at least so far that never fails).

  11. #11 Regan
    October 5, 2008

    I gotta concur with Joseph. Even if the true believers do read the book, I am not confident that they would be able to suspend disbelief long enough to take in the information beyond reaction and spin–I base this belief on the reaction to every published paper refuting the link.

    It’s the new generation, fence-sitters, the larger public, and decisionmakers who I hope this message reaches.

  12. #12 borealys
    October 5, 2008

    having vaccines (like the MMR) given in single doses sounds like common sense to parents who’ve had to struggle to hang onto a crying (if not screaming) child–a baby–getting a shot.

    I don’t know … if getting a vaccine is traumatic for a child, wouldn’t it be “common sense” to get as many of them out of the way with a single shot as possible, rather than have to go through it three separate times?

  13. #13 kristina
    October 5, 2008

    @borealys, I very much agree—not sure if that’s occurred to those calling for single dosage vaccines.

  14. #14 Ms. Clark
    October 5, 2008

    “having vaccines (like the MMR) given in single doses sounds like common sense to parents who’ve had to struggle to hang onto a crying (if not screaming) child–a baby–getting a shot.”

    I think maybe Kristina meant “single dose” as in one single combined dose of “MMR” instead of “single doses” of M, M and R. Usually, “single dose” refers to the amount of vaccine in a vial. As in a single-dose vial of vaccine contains enough vaccine in it for one patient. A multi-dose vial has enough vaccine in it for several patients. The multi-dose vials need to have a preservative in them because different needles enter the same vial multiple times.

    So yeah, combination vaccines make for less trauma for the kid and fewer trips to the doctor (which for kids could mean being exposed to another kid–a contagious one–in the waiting room) and less expense over all.

    There’s no reason to split out the vaccines and good reason to follow the CDC schedule unless the doctor knows something specific about the child that might indicate that a different schedule would be needed for that child (the child is allergic to eggs or has advanced AIDS and can’t get the live virus vaccines).

  15. #15 Ms. Clark
    October 5, 2008

    Autism needs to be framed this way:

    *It’s been around forever. There is no “new autism” vs. “old autism”.

    *There has been no epidemic.

    *A minority of kids regress, even those that seem to regress usually are not normal from birth, there are early signs that many parents miss. The majority of ASD kids are obviously different from birth.

    *Autistic kids grow up and have kids of their own sometimes (Joseph is one, I am one, jypsy is one) If you want to know where “all the adults are” look at the parents. (like, excuse, how obvious is this???) Not all parents of ASD children are autistic themselves, but many are. If you see a really normal mom complaining on TV about vaccines, ask yourself… where’s the dad? Why isn’t dad on camera? How autistic is he? How ‘in denial’ is mom about that?

    *The corollary to autistics grow up and have autistic children: you’ve probably met many many ASD adults in your life you just thought they were very shy or weird or trying to be eccentric…or you thought they were schizophrenic (they talk to themselves, but not to unseen voices), or you thought they were ill-mannnered or didn’t like people.

    *Further on that thought: Just because Joe or Jane Smith can drive a car today doesn’t mean s/he wasn’t a screaming, feces smearing, non-verbal “classically autistic” “Kanner autistic” 4 year old. There ARE kids who seem to grow out of autism. They may become quite normal or just very able to function where they are and have some extra “quirkiness”. And they did not a need a half million dollar’s worth “early intensive intervention” to do it.

    Once more with feeling: There are kids who grow out of fairly severe looking autism.

    Again because so many people out there have missed this point: There are kids who grow out of fairly severe looking autism.

    And it didn’t take any particular therapy to get them there. Just good parenting and normal health care.

    So the next time someone tells you that little Micky Forbish was a “classic autistic” until mommmy took him to Costa Rica for stem cells (or paid $50,000 a year for Lovaas brand ™ therapists to come to the home), and then a year later he was in school without an aide and no one would guess he was ever autistic… say to them: “SO WHAT???”

    There are kids who grow out of autism. If little Micky Forbish is the only one of a hundred kids who got that therapy who ended up all shiny and normal, then it doesn’t mean that the therapy worked for him. It means that he’s probably one of those minority of kids that each year grow out of fairly severe looking autism.

    *Autism isn’t a disease and it isn’t a fate worse than death.

    *Autistic people deserve respect but they rarely get it in most parts of the world. They may be murdered simply because they are autistic. This is not right no matter who says that the autistic person was better off dead.

    *Autism is NOT reversible via any particluar therapy or combination of therapies.. Yes, some outgrow it, but there’s nothing to say that any magic thing did it. Some of them just developed with normal parenting into a more normal kid. Most autistic kids are NOT going to turn out normal they are NOT going to “recover” or turn out normal no matter how early you start the therapy or how much money or effort you put into it. This new love affair with “early intervention” scares the daylights out of me because everyone is just sure that if you have the right motives you can do whatever occurs to you to a 12 month old in an effort to halt autism, and the kid will be better off. This is stupid. You can not just take a baby and do anything that occurs to you (30 hours a week of forced eye-contact therapy… to prevent him from falling into autism) and say you know that it can not harm the child. Anything extraordinary you force on a baby can have long lasting negative results. But if you believe that autism is a fate worse than death, then who cares if you do some damage to a baby because at least, if your idea works, he won’t be autistic.

    *Yes, the autistic person needs to adapt to the wider world, but the wider world needs to adapt to the autisic person, too.

  16. #16 Ms. Clark
    October 5, 2008

    I should add, for people who don’t know me, just because there’s no reason to throw millions of dollars and frightening levels of effort at a child in order to get on top of autism and make the kid normal, that doesn’t mean that the kid should not get any therapy.

    Most autistic kids will benefit from good teaching (not ABA- “Look me in the eye and I’ll give you an M&M”, not “Touch blue and I’ll give you an M&M”, “Stand up and I’ll give you an M&M”) but an education, as in, “This is the letter A, it sounds like “a”. The word “apple” starts with the letter “A”… Boise is the capitol of Idaho… Carbon is an element. George Washington was president of the United States…”. They may need speech therapy and occupational therapy and physical therapy. They may need something like a picture schedule to tell them what is going to happen on that day, and they may need access to a talking keyboard or a computer or a letter board so they can indicate what they are thinking.

    My kid got special ed, regular ed, physical, occupational and a tiny bit of speech therapy.

  17. #17 douchashov
    October 5, 2008

    I assume there are at least three categories of parents: those who vaccinate their children without a second thought, those who vaccinate with a certain trepidation, and those who refuse or are forced to vaccinate. I consider myself to be in the middle category: I don’t want my child to contract a deadly disease, I am not happy that a growing number of parents are putting their and my children at risk by refusing to vaccinate, and every time my child has to be vaccinated I think: “Is this truly necessary?”

    Before every vaccine you have to sign off on the potential risks involved, so even if you are 100% on top of the science (which I am not), “what ifs” have to cross your mind. This is compounded by the physical invasiveness of vaccinations alluded to here (and discounted in comment #4)–especially so if your child suffers from any of a variety of allergies that really complicate the vaccination procedure.

    But contrary to the impression given in Offit’s book, of a medical establishment cowed by the anti-vaccine crusaders, I have found a callous nonchalance towards parents’ concerns when it comes to vaccines. I just had to take my child to get medical clearance for pre-school and they wanted to give her six vaccines (including the MMR), and this seemed preposterously high. I protested, and turned out that two of the six vaccines had already been given on previous visits but the hospital was lax about updating their records. As it is, my child got four vaccines and I had to hold her down while two personnel worked her arms (one on each side.)

    The week prior I had a similar thing happen to me. My school put me on hold because they didn’t have a record that I’d gotten my second MMR. I made the student center order my charts from medical records, a process that took two weeks, and yes, I’d already had it. They just hadn’t marked the appropriate check-box on their computers.

    Anti-vaccinationists aren’t going to be swayed by this or any other book. But, just as parents have a responsibility to vaccinate their children, the medical and scientific establishment has to understand the trepidation that goes through parents’ minds at the point of injection. Vaccines need to be taken seriously all around.

  18. #18 Candyce
    October 5, 2008

    Um, Neurotoxin and children’s vaccines. Where is the common sense? And I don’t understand your comment- “What does green our vaccines mean anyway?” That is also a no-brainer!!

  19. #19 Regan
    October 6, 2008

    “Touch blue and I’ll give you an M&M”, “Stand up and I’ll give you an M&M”) but an education, as in, “This is the letter A, it sounds like “a”. The word “apple” starts with the letter “A”… Boise is the capitol of Idaho… Carbon is an element. George Washington was president of the United States…”. They may need speech therapy and occupational therapy and physical therapy. They may need something like a picture schedule to tell them what is going to happen on that day, and they may need access to a talking keyboard or a computer or a letter board so they can indicate what they are thinking.

    My kid got special ed, regular ed, physical, occupational and a tiny bit of speech therapy.

    Funny. I did the “A” sounds like “a”, where’s the state where we live?, what do you want to do now?, picture exchange communication, picture schedule, how to play baseball, etc. using behavior analytic methods of instruction, transfer and generalization. The first examples you gave are discrete-trial training, one instructional technology within the science–and not very high level skill targets, for that matter.

    My daughter has had physical, occupational, speech therapy, social skills training…and behavior analysis. The dog-training with the m&m is a widely cited example that I feel misrepresents the full range of possibilities of ABA applications–such as verbal behavior, precision teaching, milieu mand, incidental teaching, pivotal response training, natural language paradigm, direct instruction, functional behavioral assessment, and when suggested by student characteristic or curricular target–discrete trial training.

    As I stated before, our personal intention was not to make our daughter “normal”, but to help her learn by using an instructional model that met her particular needs and then fade to more typical instruction. When she still needs a boost, we return to a more intensive or focussed technique. When not, we don’t.

    I apologize for the segue from the framing topic, but the example seemed to be something of a straw man, and I believe, unfair. On-topic, I agree that framing the positive potentialities of those diagnosed with autism than the trainwreck, toxic, mercury-poisoned or negative examples commonly used in publicity and the media would better serve everyone

  20. #20 kristina
    October 6, 2008

    thanks for correcting me, Ms. Clark! and for the frames….

    Charlie (Ms. Clark knows this……) has had a lot of ABA. It’s never been “touch this” and get an M & M either and there is a lot of understanding and attentive to his sensory needs and to teaching commnication and other strategies, along with academics. While some of our earliest ABA therapists talked about recovery, Jim and I were were very dubious about the notion, and Charlie’s teachers never talk about recovery or being normal or any of that.—-That said, Charlie has been in some programs that said they used ABA, but the teaching struck me as rote and, yes, robotic; he never did well in those programs.

    Getting a little OT, so back to the framing topic:

    douchashov, you wrote

    just as parents have a responsibility to vaccinate their children, the medical and scientific establishment has to understand the trepidation that goes through parents’ minds at the point of injection

    We’ve generally had some difficult experiences with doctors and the medical establishment. Too often it seemed we were just supposed to take whatever we were told as what we should do, no questions asked, by many doctors (and also, I should note, by some of the biomedical/DAN! (Defeat Autism Now!) practitioners who we took Charlie to). We have stayed with one doctor (my son’s pediatric neurologist) for many years and even though he is now in a different state because he really sits down and listens to us. Our visits involve conversations and a lot of good exchange of information and viewpoints. And (this is the most important point) Charlie clearly likes him and looks forward to seeing him.

    So yes, I do think more acknowledgement of the reality of parental fears is needed, is necessary. I now take Charlie to a nurse practitioner (she is part of a practice of pediatricians) and she has been very helpful, talked things through with me, and talked to Charlie. Regarding those additional vaccines that Charlie had to get before entering 6th grade: She and I had a whole talk about the fears about thimerosal and mercury; I could tell she had talked about this plenty before with other parents.

    @Candyce, yes, a “no-brainer”—the “green our vaccines” phrase makes no sense.

  21. #21 Tony Jeremiah
    October 6, 2008

    Given that autism falls within the domain of psychology, I think it is remarkable that much of the discussion on scienceblogs has discussed it primarily from a medical frame (i.e., its link to vaccines). I believe information from psychology should be included as well…

    1) Parents hear about the rise in the prevalence rate of autism and vaccines provide a simple and straightforward explanation.

    An article written by Gernsbacher, Dawson and Goldsmith (2005) suggested three reasons why one should not believe in the rise in autism: a broadening of the diagnostic criteria for autism, increased public awareness of autism, and increased focus on intentionally finding autism cases.

    (b) In relation to broadening of the diagnostic criteria, it is important that autism be recognized as a spectrum disorder, since autistic symptoms can range from mild (Aspergers Syndrome) to severe (PDD-NOS).

    (c) Developmentally, autism may be suggested in children who do not show particular milestone language skills from 0-24 months (see wikipedia for specifics). I think this is the time period where most children receive vaccinations, so the autism-vaccine link is likely a timing coincidence.

    (d) If the worry about vaccines causing autism is really an issue about parents lacking a sense of control, then parents should be able to gain some control by becoming aware of what the normal time range is for particular skills (e.g., after birth, when should they expect their child to be cooing, babbling, gesturing, making eye contact, etc). If they start noticing that these skills are developing late in their child, that’s when it’s time to get a more thorough check from the doctor. Perhaps medical professionals could handout milestone charts to parents as they leave the hospital with baby, if that is not done already. Early recognition leads to early prevention and reduced autism severity.

    Reference

    Gernsbacher, M.A., Dawson, M., & Goldsmith,H.H. (2005). Three reasons not to believe in an autism epidemic. Current Directions in Psychological Science, 14, 55-58.
    http://www.psychologicalscience.org/media/releases/2005/pr050630.cfm

  22. #22 Kathryn
    October 6, 2008

    I consider myself to be in the middle category: I don’t want my child to contract a deadly disease, I am not happy that a growing number of parents are putting their and my children at risk by refusing to vaccinate, and every time my child has to be vaccinated I think: “Is this truly necessary?”

    Hear hear, douchashov! I fully concur. I hesitate to post this, as I�m becoming less and less enchanted with the �discussion� here. As I have written previously, I am the mother of a fully-vaccinated, seemingly healthy 8 month old. As I also wrote, the decision to immunize my child was based on weighing the known risks of vaccine-preventable diseases against the known risks of adverse vaccine reactions plus the unknown risks of injecting my small child with 3 jabs and 1 swallow of laboratory-produced materials at the tender age of 2 months old (please hear me out before you jump down my throat for suggesting that this practice is anything but clearly safe). I also live in Seattle, a hotbed of anti-vaccine proponents. So at the risk of sounding conceited here, I believe I am on the front lines.

    As an educated adult who frequently engages in discussions of pediatric health with other moms, I feel compelled to arm myself with the most accurate information to be able to address whatever unfounded anti-vax arguments I may encounter. I read AFP with great interest, and I thank Dr. Offit for adding to my arsenal. I have a much better handle on the MMR /thimerosal controversies, as well as the cast of characters that started and continue to propagate the myths about vaccines (in the case of several of the personalities, it seems that truth is even better than fiction!). After reading this book, it is clear to me that neither MMR nor thimerosal have anything to do with autism, and if someone were to suggest to me that this was the case, I am now equipped to set them straight.

    But put yourself in the shoes of the average parent in my social circle: someone with a healthy distrust of �the establishment�, the propensity to opt for more �natural� health care, and the best interests of their child at heart. When such a parent has gone out of their way to avoid potentially toxic exposures during pregnancy, to birth their child without pain medications, and to pay through the nose to buy organic baby food, it is perfectly logical for such a parent to question the long-term safety of 3 jabs + 1 swallow of foreign material being pushed on their 2-month old. Is this really necessary? Are you sure this is not going to have any undesired effect on my child? This is no Jenny McCarthy. This is no matter of �shifting hypotheses�. In my mind, this is a very normal question from a concerned parent. And the answer (or lack of answer) that I have found so far is not satisfactory.

  23. #23 Chris H.
    October 6, 2008

    Candyce said “That is also a no-brainer!!”

    Umm, like actually reading the book to participate in a book discussion?

  24. #24 Kristina
    October 6, 2008

    @Kathryn,
    I think it’s the putting oneself of the average parent that is needed.

    I’ll also say that I did, as ’tis said, “everything right” when I was pregnant with my son. I made all of his babyfood myself, breast-fed him for 13 months, and more.

    But when my son showed delays—his gross motor development was definitely behind—the first thing I thought of was relatives with similar delays in walking.

    I feel the fears of parents and yes, we did get my son’s medical records from when he was an infant and toddler to find out as much as we could about what vaccines he’d been given.

    But I think the vaccine discussion needs to broaden out to take genetics much more fully into consideration (beyond talking about “genetic predispositions”) and to think that there can be _causes_ of autism.

    Thanks very much for your front-line perspective; I at least really need to hear it.

  25. #25 HCN
    October 6, 2008

    Kathryn said “I also live in Seattle, a hotbed of anti-vaccine proponents. So at the risk of sounding conceited here, I believe I am on the front lines.”

    Yes you are!

    (um, not the conceited part… yes, you are on the front lines1)

    Guess which county had a pertussis epidemic in the late 1980s through the early 1990s? It was through asking the parents of potential playmates of my kid with the seizure history and only a DT vaccine of their vaccine history that he managed to not get pertussis. In the last few years I have talked to more than a couple of other mothers whose actually healthy kids did get pertussis, one from his grandmother. These kids suffered a great deal, even though they were vaccinated. Though being vaccinated made them less sick than others. It is not called the “100 day cough” in China without reason.

    And from the bottom of my heart I say: Thank you for having an open mind willing to look at all the evidence!

    Thank you, thank you, thank you!

    PS: About swallowing that liquid, in my day, and my for my kids as babies it was for polio… now it is for rotavirus. Trust me, you don’t want the rotavirus to hit your household. Not only does it mean rivers of diarrhea (I had the kid in multiple Baby Diaper Service diapers AND a plastic diaper, and it still was a river of a mess)… but I got the infection myself (of course, dealing with all the leaks!). I actually took to wearing a diaper to help me due to how horrible it was! Though the funny thing is… when my son had a seizure due to dehydration and we had to call 911 (with a busy signal at first!), have a bunch of large firemen in our tiny house and then an ambulance trip to the hospital — my symptoms went away. Trust me, you do not want any of your kids to get the rotavirus!

  26. #26 Kristina
    October 6, 2008

    Charlie had rotavirus for 2 weeks and, while I didn’t catch it (amazingly), I’ll never forget numerous aspects of it. My husband Jim started to call it “roto-rooter-us” because that’s what seemed to be going on to Charlie’s insides. He was a skinny little shadow of himself after it was over.

  27. #27 Ms. Clark
    October 6, 2008

    The label ABA is now used for teaching and for basic parenting. What I mean when I say ABA is not “breaking something down into individual steps and teaching them one at a time” though that might not be the best way to teach everything to autistic kids whose brains seem to be wired to pick up things as a whole, holistically if you will, so that breaking things down, step by step might actually interfere with their learning some things.

    I say this because of all the things that autistic kids can just “pick up” without being taught. Many teach themselves to read and to understand calendar patterns for instance. That tells me something specific about autistic kids and it tells me that if a kid is in a typical true ABA environment it could be absolutely abusive to an autistic kid.

    Real ABA is not about breaking things down into their component parts it is about managing the child’s… behavior.

    Behavior. So that the behaviorist decides why it is that the child is doing X behavior and chooses to reinforce or punish the child in such a way to mold the behavior.

    So, you can have a child who is acting out because he has an infected appendix, and the therapist can decide that the child is just trying to manipulate him with his writhing on the floor or screaming, and so he may try to “extinguish” this “writhing behavior” by ignoring the child…

    This is what behaviorism is set up to do. To put all the control of the interpretation of the “behavior” into the hands of any old idiot with a desire to control another person’s behavior.

    Behaviorism is about a person sitting there and judging what it is the child needs to be doing first and second and then deciding that he needs to do X 10 times and that times 10 for a total of 100 times with a 80% success rate before moving on.

    Because of this insanity, Carly Fleischman as ABA’d and ABA’d some more and no one noticed that she had learned to read and had some really sophisticated thoughts, because they were too darn busy trying to get her to touch blue for the 100th time.

    The same with Dov Shestack. They thought he was retarded. His parents went around telling everyone that he was an “kidnapped empty shell,” not only retarded but there was no person there!! And little Dov while idiot ABA therapists (he had 40 hours a week of Lovaas trained therapy in the home for YEARS) overlooked that the kid could read Hebrew as well as English (he had picked this stuff up because it was going on around him while idiot ABA therapists were trying to get him to touch blue for the 10,000th time. Then someone handed him a letter board and started treating him like a human with feelings (can’t have that in ABA) and he had all these thoughts and ideas. It was not “facilitated communication” he was independently pointing to letters on a board.

    Tito Mukhopadhyay wasn’t subjected to hours of ABA because his mom was busy teaching him history and literature from the time he was young. He may not be able to “touch blue” on command, even now, but he can write exquisitely.

    ABA is oversold. The implication is still that without it kids are doomed and this is wrong. It sets up parents to get sucked into quackery, and that is a fact.

    If you are teaching your kid and using rewards, depending on how it is done, you can destroy their desire to learn the thing that is being rewarded. This has been demonstrated, I think beyond a shadow of a doubt with research. Children should learn and do learn for the joy of learning. Teaching them like they are dogs that need to be rewarded with a gushy “goood girl!” or a treat is wrong if it’s overdone, and from what I can see about ABA it is usually done in a way that is unnatural and demeaning to the child.

    If a typical child can be taught without a saccharine “GOOD BOY!” every step of the way, then why can’t autistic kids? This is what ABA is in many cases. It’s sick. It’s fake and it’s wrong. And it’s oversold. Autistic kids do learn without it. Kev’s daughter learned and is learning without it. My kid did. jypsy’s kid did. I would guess that Joseph’s son was never exposed to ABA, though I haven’t asked him that specifically.

  28. #28 Ms. Clark
    October 6, 2008

    http://abcnews.go.com/Health/Story?id=4311223

    Carly Fleischmann for those who don’t know the story.

    Dov’s story is in his mother’s book, “Strange Son.” Tito’s story is in his books, including his most recent one, “How can I talk if my lips don’t move.”

    Another good one is “Autism is a World” that features a woman, Sue Rubin, who was also thought to be retarded until she was given access to a computer keyboard. Her communication is somewhat facilitated but it is her that is communicating.

    Amanda Baggs is autistic and so is Michelle Dawson, and they’ve both been subjected to ABA and as I understand it aren’t impressed with how they were treated using ABA. I don’t think either of them would recommend a parent use ABA.

  29. #29 Kristina
    October 6, 2008

    One more frame, referencing Dr. Offit on p. 219:

    Autism is genetic , but not all autism is inherited.

  30. #30 Ruth
    October 6, 2008

    I’m old enough to have been told my future was limited because I was female (girls can’t do math and science, unless you are a nurse). Some things I will never be able to do because I am smaller than the typical person (still a white male in our society), but other things I can do, just with some ajustments by society (flextime so I can work and raise my kids too). I think we need to reframe what our kids will grow up to do, if society will change some of the ground rules.

  31. #31 Prometheus
    October 6, 2008

    Candyce ranted:


    “Um, Neurotoxin and children’s vaccines. Where is the common sense? And I don’t understand your comment- “What does green our vaccines mean anyway?” That is also a no-brainer!!”

    Let’s first take on the obvious “straw man”. The “neurotoxin” – presumably mercury – in vaccines was removed – or at least reduced by 99% – about seven years ago. The autism “numbers” keep going up. Now that the thimerosal exposure to children has been reduced to below the 1970 level, why is the “autism” prevalence still climbing at the same rate?

    The obvious answer is that the rise in “autism” had (and has) nothing to do with thimerosal. Funny how some people consistently miss the obvious.

    And to forestall the obvious follow-up anti-vaccine canard – the aluminum content of vaccines was not increased to “make up” for the removal of thimerosal. Thimerosal was a preservative; aluminum is used to enhance the immune response, so that less antigen (you know, dead bacteria and viruses) is needed.

    Having disposed of all that straw, we are left with the “green our vaccines” canard. And what, exactly, does that mean?

    Since Candyce seems to think it is a “no-brainer”, perhaps someone without a brain could give us the answer. “Green our vaccines” is a slogan, not a policy or a plan of action. The people proposing to “green our vaccines” have demonstrated – time and time again – that their understanding of fairly basic biology is tenuous at best.

    Let me ask the question in a way that even the “Straw Man” (see: The Wizard of Oz) could answer:

    [1] What – exactly – is in the vaccines that you would like to see removed or changed? Be specific and – please – don’t use vague and unhelpful words like “toxins”.

    [2] For the things you would like to see removed, what is their concentration in currently available vaccines? Please give the source(s) of your information. [Note: citations of anti-vaccination websites are not going to persuade many people.]

    [3] Would vaccines function with the changes you propose? Cite published studies supporting your assertions.

    I ask these questions because the “Green our vaccines” movement seems to be long on emotion and rhetoric and short on facts and details. Everyone wants to be “green”, right? But what does it mean?

    The rhetoric from the “Vaccine-Greens” (meaning no disrespect to the Green Party) would have you believe that current vaccines contain floor sweepings and are made in factories that would make The Jungle look like a microchip clean room. The truth – I suspect – is rather distant from those images.

    So, Candyce, here’s your Big Chance to show all of us nasty skeptics how the “Green our vaccines” movement isn’t simply a group of gullible people rallying around a catchy slogan.

    Your turn.

    Prometheus

  32. #32 alyric
    October 6, 2008

    @Regan

    I have very little to add to what Ms Clark has said, but this bothers me:

    “The first examples you gave are discrete-trial training, one instructional technology within the science–and not very high level skill targets, for that matter.”

    A preliminjary question – if this traches only very low level skills , care to to tell us how such behaviorist luminaries such as Lovaas and Gina Green could get it so wrong? This is grass roots ABA, set up for humans. This is the real ABA, with very little allowed in the way of behaviors that might interfere with the target behavior. The fact that it’s robotic and doesn’t generalise is why ABA isn’t anymore. You gave a list of all the naturalist techniques that are now part of the arsenal and I applaud the lot of them.

    But, and this is the main point. It is not true and highly inappropriate to call ABA a science, especially on the science blogs website. It never has been a science and mainly because it does not test falsifiable hypotheses. Post hoc attribution of the significance of events is a very big clue, but not the only one. I highly recommend Control: A History of Behavioral Psychology” by University of Saskatchewan Professor John A Mills for why this is theoretical bunk.

    Sure, ABA has changed, but it’s a Lamarkian rather than a Darwinian form of evolution and anybody can coopt the parent’s handbook and throw in a little reinforcement, especially if they choose to ignore Deci and Ryan’s work on the deleterious effects of rewards on learning.

    Most of my beef with ABA is that I suspect it’s probably suboptimal for most of what constitutes the spectrum these days but ABA therapists are pushing like anti-vax zealots for it to be the only form of treatment. The other reason is that I blame ABA and its practitioners for why so little is known about the learning styles and preferences of autistics. Sure it’s historical, but it’s all because of that peculiar notion of behaviorist dogma that you didn’t need to know any of that in order to do ‘operant conditioning’ – another bit of behaviorist anti-science. So, there is not one current intervention that is based on anything known about autistic learning styles and preferences and that’s all interventions, not ABA alone and that’s a deplorable state of affairs. Needs to be fixed big time and a lot more money devoted to cognitive studies of autistics, not behavioral ones.

  33. #33 kristina
    October 6, 2008

    I’m not sure if this is quite the right place for an extensive discussion of ABA. I’ve said this before on AutismVox: ABA has been the main teaching method for my son’s education, a reality that my husband and I came to grudgingly. We have investigated the numerous other methods of teaching autistic children and these were not successful for Charlie. Indeed, at one point, we stopped ABA and tried to get Charlie into a more mainstream setting; he struggled mightily and had so many behavior issues that he was in effect expelled from the public schools. A combination of 1) ABA, 2) medication, 3) increased awareness of his sensory sensitivities and the difference—the neurodiversity, if you will—of his wiring—helped get some very severe self-injurious behaviors under control.

    I think anyone, parents and therapists, who learns about ABA needs to know its very, very, very troubled history, such as the use of ABA to “cure” homosexuality by Lovaas. Ms. Clark has written some thorough posts about this.

    I question the ethics of anyone, ABA therapist or DAN! doctor, who claims that a certain therapy is going to “recover” or “cure” a child from autism. It might be a way to sell a therapy or treatment, but autism is not something one is “cured” from. It’s lifelong and far from that being something terrible, it’s ok.

  34. #34 Joseph Wyatt, Ph. D.
    October 6, 2008

    There are some unfortunate misunderstandings about behaviorism and ABA treatement in the message above. The description of how ABA treatment proceeds is unlike that done by any responsible behaviorist I have met in my 30 years in the field. Most likely, the author has had the misfortune to encounter someone with an axe to grind against behaviorism, someone who endorses an ineffective fad such as facilitation communication or some other technique proven to be ineffective. In my experience such folks have been lured by the siren call of the quick fix. To my knowledge, as a behavior analyst for several decades, ABA is the only treatment proven effective for autistic children.
    Joseph Wyatt
    Professor of Psychology
    Marshall University
    Huntington, WV

  35. #35 Liz Ditz
    October 6, 2008

    Kristina wrote:

    Some thoughts I’ve had for framing autism:

    1) Autism is a neurodevelopmental disability.
    2) Autism is lifelong; there are no cures for it. With appropriate education and services, autistic individuals can learn much and thrive in the community.
    3), 4), 5)…….. [Yours to fill.]

    My vote for #3:

    3) Autism is a spectrum disorder. Different people with autism have differing [symptoms] [attributes] [features*].

    Here I struggle between the research/accuracy dimension and the real-world services and supports available.

    I suspect it would be helpful to have a much more subtle and refined typology of autism, describing dimensions in (for example) receptive language ability, expressive language ability, effects on gross and fine motor abilities, and so on.

    But the reality for parents of children with autism is that there’s a big box that says “autism” and from that label flows services. My concern is that a finer, subtler typology would have the effect of cutting children off from services.

    My vote for #4:

    People with autism may have difficulty acquiring or consistently using [social cognition] [social conventions] [interpersonal language] [add your own]. Just as we as a society are making efforts to make our society more accessible for those with mobility impairments, we should be make our society more accessible for those with social thinking impairments.

    I’m not perfectly happy with how I’ve phrased #4. I want to get at the idea that social thinking (for lack of a better term) is learned behavior, and people with autism have a learning disability in this area. It’s not that people with autism can’t learn but that they perhaps require explicit, intense, direct teaching to learn in this dimension.

    Correct me if I’m wrong, but I believe there hasn’t been much research on social thinking and effective instruction in social thinking.

    Here are two overview studies:

    Behav Modif. 2007 Sep;31(5):682-707.Click here to read Links
    Social-skills treatments for children with autism spectrum disorders: an overview.
    Matson JL, Matson ML, Rivet TT.

    Louisiana State University, LA, USA.

    Marked advances in the treatment of children with autism spectrum disorders (ASDs) has occurred in the past few decades, primarily using applied behavior analysis. However, reviews of trends in social skills treatment for children with ASDs have been scant, despite a robust and growing empirical literature on the topic. In this selective review of 79 treatment studies, the authors note that the research has been particularly marked by fragmented development, using a range of intervention approaches and definitions of the construct. Modeling and reinforcement treatments have been the most popular model from the outset, with most studies conducted in school settings by teachers or psychologists. Investigators have been particularly attentive to issues of generalization and follow-up. However, large-scale group studies and comparisons of different training strategies are almost nonexistent. These trends and their implications for future research aimed at filling gaps in the existing literature are discussed.

    PMID: 17699124

    J Autism Dev Disord. 2007 Nov;37(10):1858-68. Epub 2006 Dec 29.Click here to read Links
    Social skills development in children with autism spectrum disorders: a review of the intervention research.
    Williams White S, Keonig K, Scahill L.

    School of Medicine, Virginia Treatment Center for Children, Virginia Commonwealth University, 515 North 10th Street, Richmond, VA 23298, USA. swilliams25@vcu.edu

    Social reciprocity deficits are a core feature of the autism spectrum disorders (ASD). This review summarizes the state of research in group-based social skills training programs for school-age children and adolescents with ASD. All published studies of group social skills interventions between 1985 and 2006 were reviewed, as well as dissertations examining group-based social skills intervention programs. To assess the state of the science, a template developed by an NIMH work group was applied to 14 identified studies. Based on this review, the empirical support for this approach is incomplete, but promising intervention strategies were identified. Recommendations for the design of future treatment trials to guide clinical practice are offered.

    ——
    * I don’t mean “facial features”. I mean features in the sense of, “that’s not a bug, it’s a feature!”

  36. In response to alyric, how is it inappropriate to refer to ABA as a science, when it is supported by over 50 years of research, all of which demonstrate functional relationships between behavior and environment through systematic manipulations (changes in independent variable effect dependent variable). And since one of the seven dimensions of ABA is social significance, it is not the behavior analyst (I use this term instead of “behaviorist”, as behaviorism is the underlying philosophy of ABA, but is not in itself a science.) that selects the target behaviors, but the stakeholders of treatment: parents, teachers, and society at large. It seems that the issue here is families who have had unfortunate and unsatisfactory experiences with specific practitioners, although I would postulate that this is true of any profession. For more info on what ABA is and isn’t, please refer to: http://abainternational.org/ba.asp

  37. #37 borealys
    October 6, 2008

    (b) In relation to broadening of the diagnostic criteria, it is important that autism be recognized as a spectrum disorder, since autistic symptoms can range from mild (Aspergers Syndrome) to severe (PDD-NOS).

    Nitpick: PDD-NOS is not at the severe end of the autism spectrum. It’s defined as a condition involving some, but not all, of the features of autism, and is typically at the mild end of the spectrum, though severity can vary.

  38. #38 borealys
    October 6, 2008

    I’m not perfectly happy with how I’ve phrased #4. I want to get at the idea that social thinking (for lack of a better term) is learned behavior, and people with autism have a learning disability in this area. It’s not that people with autism can’t learn but that they perhaps require explicit, intense, direct teaching to learn in this dimension.

    This is close to what I’ve told some of the families I’ve worked with. (I’m a speech-language pathologist at a child development clinic, and because of the way the system is set up right now, I’m often the first professional after the pediatrician that a parent gets to see when they suspect autism.) Kids with autism don’t experience the world in the same way that typically-developing kids do, and some things that most of us learn effortlessly, especially social skills, don’t come easily to them. Since there’s a big social dimension to language acquisition, communication doesn’t come easily either. So, we have to explicitly teach those skills.

    Of course, there’s more going on in autism than just that, but the communication aspect is the one I know the best. :-)

  39. #39 alyric
    October 7, 2008

    @Corey Robertson

    Your entire post stands as a prime example of why ABA remains an idea short of a paradigm. I refer particularly to your use of independent and dependent variables, very familiar concepts to the folks here on the science blogs, but they must be as bemused as I continue to be at exactly how in any meaningful sense one could apply them to something as ill defined, not to say nebulous as the dimension of ‘social significance’. You have also unwittingly strayed into quack territory with blaming the practioner, rather than the medium for failures in the system. That’s a standard for the altie crew, even though ABA is considered mainstream. How very odd.

    Your 50 years of research becomes less impressive when you see where it’s published and that’s seldom in mainstream psychology journals, a fact often lamented in behaviorist journals. It was also in reading quite a lot of that research that i became aware just how far removed from actual science, read the scientific method, this stuff is. And finally, in that 50 years there is one, just one, small randomised controlled trial of ABA. It was not very successful at all. In fact judging by the small amount of data known for autistics who had no interventions, it could be argued that the result was comparable to placebo.

    I’m not arguing for no ABA by the way, because a) the realities of service provision would make it just too easy for the powers that be to keep underfunding and undersupplying services and b), it isn’t ABA anymore. Face it, Corey, the techniques used these days are just too milieu oriented and natural for the ‘analyst’ to have a snowball’s chance in hell of directing any stimulus, assuming in such an environment they could even be identified. And that’s good. We could also add c)- why pick on ABA for lack of a respectable empirical foundation, no one else has got one either.

    What would be even better would be for the therapists to actually adapt their methods to what is known of the cognitive styles of autistics. You know, exactly why is is that autistics do so amazingly well on the Wechsler block design, among a few dozen things we are slowly learning these days?

    This really isn’t the place for this discussion, as someone has already pointed out, but oh well, I suppose it’s as much what does and does not constitute science as anything else.

  40. #40 Tony Jeremiah
    October 7, 2008

    @borealys (37)

    Nitpick: PDD-NOS is not at the severe end of the autism spectrum. It’s defined as a condition involving some, but not all, of the features of autism, and is typically at the mild end of the spectrum, though severity can vary.

    Thanks for this correction and clarification.

    @alyric

    What would be even better would be for the therapists to actually adapt their methods to what is known of the cognitive styles of autistics.

    What do you (or anyone else here) think of the information on this website about the use of neurofeedback training as an autism treatment? As I understand the general findings concerning the effectiveness of psychological treatments, eclectic approaches usually have the best outcomes (e.g., a combination of early diagnostics, ABA and (neuro)cognitive approaches).

  41. #41 Kristina
    October 7, 2008

    “What would be even better would be for the therapists to actually adapt their methods to what is known of the cognitive styles of autistics,” as alyric wrote—–that is actually what the therapist (ABA; speech; OT; however they might be called) do, or the ones who’ve most enjoyed teaching Charlie, and taught him the most. A good teacher can’t be too married to any methodology or dogma.

  42. #42 Tony Jeremiah
    October 7, 2008

    A good teacher can’t be too married to any methodology or dogma

    Philosphically, I would agree with this. Scientifically, I have some reservation. I’m not an autism expert (it happens to be one of many topics of interest in my developmental psychology class), so the additional information I’m gathering about it, I’m reading here first.

    The general impression I’m getting from reading the comments, is that ABA is currently the only effective treatment for autism. That leaves me with a few thoughts/questions: (1) Due to research during the cognitive revolution showing that (human) behavior is in fact significantly influenced by mental processes, behaviorism fell out of favor somewhere in the 60s. It thus strikes me as unusual that an approach grounded in behaviorism seems to be the main method for treating autism (even though current research shows autism is a neurodevelopmental disorder); (2) alyrics comments appear to suggest that there is no empirical verification that proves ABAs effectiveness in treating autism (which also leaves me with the question of exactly what the control group in such a study would be, given the eclectic nature of autism); (3) If autism is an eclectic phenomenon, it should be generally true that one treatment approach won’t work (unless one identifies a common source of its symptoms such as brain activity); (4) Certain particular treatments should have prevalance over others (and this is the important qualification to the teaching philosophy), IF, empirical evidence suggests that those approaches are actually effective. Currently (and I’m only going by the comments), it appears much of the evidence is anecdotal. Can anyone point to an actual (quasi)-experimental study, comparing, for example, persons with autism who go through ABA treatment vs. persons with autism who do not go through ABA treatment (which seems not even possible for ethical reasons), to assess ABA effectiveness? It could be that cases whereby ABA appears to work, are very much similar to situations where persons have spontaneous recovery from particular conditions (e.g., cancer remission), or, that in some instances (possibly for mild versions of autism), there are just instances off natural recovery simply as a consequence of aging?

    or the ones who’ve most enjoyed teaching Charlie, and taught him the most.

    It is probably generally true that treating a person not as a disease, but as a person, is probably beneficial for overcoming a problem. In fact, I have to agree with the pioneer of positive psychology movement (Martin Seligman), who said, “Fifty years later, I want to remind our field that it has been side-tracked. Psychology is not just the study of weakness and damage, it is also the study of strength and virtue. Treatment is not just fixing what is broken, it is nurturing what is best within ourselves.”

    ABA; speech; OT; however they might be called) do

    I only know generally what these approaches might entail, but definitionally, they strike me as different approaches that are actually all grounded in behaviorism. ABA appears to entail some form of either classical and/or operant conditioning/learning with various schedules of reinforcement; speech therapy involves learning what to say in particular situations(?); OT (Occupational Therapy?), involves basic life skills (eating, showering, driving?).

    IF, I’m understanding those accurately, I would classify those as behavioral. To me, cognitive would involve things like neurofeedback training, and/or types of games that directly train the mental processes known to be impaired in autism (e.g., the known difficulties that autistics have with theory of mind tasks.

  43. #43 Regan
    October 7, 2008

    What I read is that contemplating treatment fidelity as a variable somehow makes the value of an intervention or research suspect. I can see that if it only works when under the control of a specific facilitator or under extremely controlled conditions or under a particular practitioner’s magic hands or clinic, or saying that the treatment is so individual that it eludes definition or replication, but treatment fidelity seems to be a pretty basic area to control for.

    Just as a couple of examples of recent reviews that might be relevant to the question,

    Matson, J.L., Smith K.R.M. (2008). Current status of intensive behavioral interventions for young children with autism and PDD-NOS. Research in Autism Spectrum Disorders, 2, 60-74.

    Rogers, S.J., Vismara, L.A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child & Adolescent Psychology, 37, 8-38.

    Both of which go into some detail on experimental design, and the Rogers, et. al. particularly addressing rating compared to Chambless et al. (1996) criteria of what constitutes various levels of evidence according to the APA.

    While I always believe that it is best to read the full paper, and I would recommend that for both in order to see the particular studies examined, the authors’ full analysis and conclusions, I might highlight p. 25 of the Rogers, et. al. which has some close discussion of the original Lovaas study and the followups and replication site publications. Without trying to intentionally apply spin, which is why I cite the lengthy paragraph in full, the text states,

    “…The only comparative study (Eikeseth eg al., 2002) to examine effects of Lovaas’s treatment compared to another approach–an eclectic treatment package delivered with comparable intensity–demonstrated statistically significant differences in change scores in favor of Lovaas’s treatment. Given the strength of the findings from the four best-designed, controlled studies–Lovaas(1987); Smith, Lovaas and Lovaas(2002); Eikeseth et al. (2002); and Cohen et al. (2006) (Eikeseth’s and Cohen’s studies also involved comparison with alternative treatments)–this treatment meets both Chambless et al. (1998) and Chambless et al. (1996) criteria as a “well-established” psychosocial intervention for improving the intellectual performance of young children with autism spectrum disorders, based on the significant increase in IQ reported in these four studies compared to control groups. Although some of these four studies also report significant improvements in behavior, adaptive skills, and language skills, there is less consistency in the data in these areas. Important questions that remain concern (a) whether Lovaas’s approach itself, independent of intensity, is inherently more effective than other organized and comprehensive treatment approaches; (b) if so, for which children with autism is it efficacious?, and (c) for what areas of functioning is it more efficacious than other approaches of similar intensity? Certainly, no other name-brand treatment has yet been subjected to the rigorous examination that Lovaas’s treatment has…”

    I suggest that it might be informative to read the full text of both the above reviews, and others relevant to the question, as part of the enterprise of discerning more effective, ethical and individualized interventions and educational strategies.

  44. #44 Regan
    October 7, 2008

    And apologies, again, for going afield/off-topic of the original post on framing. That’s pretty much my 2 cents.

    Undoubtedly this particular discussion topic will happen in another time and another place. In the meantime I’ll re-read and think about all the comments made on the subject of ABA. Thanks.

  45. #45 Tony Jeremiah
    October 8, 2008

    @Regan

    Those references look interesting. I will attempt to track them down. I have a feeling a meta-analysis (in contrast to a lit review) that focuses on the efficacy of autism treatments would be quite appropriate if one has not been done already.

    In the very general context of the postings suggestions for autism frames, I’d argue that info on the current status of treatments is not completely off topic. If the indicated vaccines are not the cause of autism, that must take away the sense of control antivaccinationists have in the belief that it is the source of autism (false as that belief might be). To give back some sense of power, alternative (empowerment) frames might be to (a) provide information that enhances (parental) ability to identify early indicators, which enhances ability for early interventions (in fact, it might be possible that careful observation would reveal symptoms showing up before vaccinations are provided, which should make it obvious that vaccines are not responsible); (b) focusing/identifying treatments that are actually effective, should serve as another source of empowerment, especially in combination with early diagnosis (I imagine that genetic identification tests would be very important here if no such tests are available yet).

  46. #46 Kristina
    October 8, 2008

    There’s a reason ABA has kept recurring here—I’ve been thinking of how it seems to have become almost equated with autism education, though it’s not always the appropriate teaching method. ABA has been best for Charlie when we’ve kept up a lot of questioning with the therapists and consultant.

    @Tony Jeremiah, I think it is key to note signs of autism in a very young child, prior to vaccinations, as one strategy to counter the antivaccinationists (who always talk about how “normal” and “typical” their child was, and how a vaccine changed everything). I am glad you talk about empowerment—-it’s too easy to be simply reactionary in countering antivaccine ideas (and, often, lunacy) and the result is that one is simply reactive, rather than developing a positive platform of one’s own.

  47. #47 Ms. Clark
    October 8, 2008

    Mr. Jeremiah,

    I suggest you check out what Michelle Dawson and Dr. Gernsbacher have written about ABA. Including the following
    http://autismcrisis.blogspot.com/2007/06/tale-of-two-aba-studies.html
    Here’s a quote from it:
    “The other community-based ABA study was from the UK. It was presented with remarkable efficiency by Patricia Howlin. You can find the abstract here.

    This study included an experimental group of 28 preschool children in early intensive ABA programs, and a control group of 16 children in “autism specific nursery provision” which, unlike intensive ABA programs, is fully funded by the UK government. Because this is a community study, the groups were not randomly assigned. Outcomes after one and two years were compared.

    Dr Howlin showed graphed data from the experimental group kids first. As a group, they clearly improved over time in the chosen measures–just like the kids in Isabel Smith’s study.

    Beside these data, she then added the data from the control kids. It looked the same as the ABA kids’ data. And indeed, she found no significant difference in outcome measures between groups after two years.

    Instead, she found large individual differences among the children, regardless of which group they were in. Dr Howlin presented this data graphically.

    Having presented her own data, she went on to present a mini-meta-study (well, I can’t think of a better name for it) of ABA group designs. She started with the long list of how these studies are inconsistent with each other in multiple aspects of their design. Then she graphed how widely (and wildly) results in various measures differ among the ABA group designs where these data are available.

    …”

    ABA therapists/supervisors make a huge amount of money off of autism. They get really ugly if you question the dogma of ABA.

    There is every reason to question parental anecdotes of the “success” of ABA. Sure, maybe whatever the parent calls ABA “worked” but without proper research no one know if the parent was conned into thinking that this was the only way to go.

    Regionally, there are places where about the only thing you can get for a kid is some form of ABA. In other areas (and other countries, like the UK) it’s not common.

    For some reason, though the ABA promoters (who are frequently making money off of ABA) don’t get the point that there aren’t huge differences between the areas where the kids get loads of ABA and the areas where they don’t.

    Like… Sacramento…it’s the all ABA all the time channel. If you go looking for an RDI/floortime therapist in Sacramento… well, good luck. There are a few in the Bay area, so I understand. RDI/floortime is more common on the East Coast… I think. And then of course, there’s North Carolina and TEACCH.

    The way ABA started out being promoted made it pure quackery and charlatanism. It was promoted as an extremely expensive **cure** for obvious autism (they weren’t really talking about PDD,nos back then). If you didn’t do it then your kid was going to end up in an institution for sure… and if you did do it then maybe your kid would end up totally normal. Out of that, since it was a lie, and didn’t hold up under the least amount of scrutiny (where are all these cured ABA kids, there ought to be thousands of them), then it morphed into, it might not be a cure, but it’s the best we got.

    People don’t remember that just a couple or three years ago there were cases in the news of ABA therapists brutally abusing autistic kids. Parents were in the habit of leaving their kids alone with these therapists for hours at a time and so they put cameras on them. These were not therapists using punishments as reinforcers, they were therapists who were abusing, assaulting, harming small vulnerable children.

    There’s a whole lot of non-ABA that is called ABA now, so you get parents rushing forward and proclaiming that they love ABA and their kids got ABA (when their kid just got one on one teaching with maybe a flavor of behavioral attitude).

    ABA is intrinsically wrong. It requires that the trainer mind read the motivations of the autistic child using what the trainer believes to be how the kid would act if the kid was being stubborn or disobedient. So if the trainer says, “Do this” and the kid doesn’t do it then the trainer decides to punish the child (sometimes by ignoring the child, sometimes using something like a spray bottle with vinegar in it or even by hitting the kid, though no one likes to admit that this still can happen) or the trainer decides to “reinforce” an action that is desirable to the trainer. So if the trainer doesn’t want to see the kid flap, then the trainer, without regard to what is known about the neurology of autism, might decide to try to extinguish flapping “behavior”. The trainer might take it upon himself to decide that eye contact is necessary (it is not), and put the child under great stress for no good reason, in order to enforce eye contact.

    And the kid might be in pain (actually dying, like from appendicitis) and “acting out,” but the trainer might decide that the kid is in a bad mood because of something else. There was at least one case of a child dying because the trainer refused to consider that the kid was in pain and ignored the “acting out.”

    And, it is known that autistics can have problems with processing so that they might hear a command and not actually register it for several minutes later, which kind of messes with the whole if/then contingency garbage of ABA.

    And, it is known that autistics can will their muscles to move, and yet get no movement. Since ABA therapists are such lousy mind-readers, they are not going to think, “this kid is trying to obey my command, ‘touch blue’ but he can’t because he is suffering from some motor problems right at this moment.” Instead the trainer is going to subject the kid to some kind of contingency because the kid is “being stubborn” and not obeying like a good little Skinner-box pigeon.

    Charlie’s experience with ABA might have been good for him, but it doesn’t mean that another experience might have been just as good. And it doesn’t mean that other kids haven’t been seriously harmed by ABA. Which is not to say that Kristina is a bad person, she is a devoted mother and loves Charlie very much.

    The fact that so many kids do well, and even “recover” without ABA ought to give everyone pause, because the way ABA is offered now it is setting parents up for desperation and making them targets of DAN! style quackery and antivaxers (who promise that autism is reversible much more commonly than 40% of the time and for less money than ABA). The way ABA is being offered now makes autistic children objects of hatred because they are “so darned expensive.”

  48. #48 BioinfoTools
    October 9, 2008

    For those with access to Nature, a recent edition has a review of Offit’s book:

    http://www.nature.com/nature/journal/v455/n7213/full/455594a.html

    Injecting trust into vaccines by Jeff Thomas
    Nature 455, 594-595 (2 October 2008) | doi:10.1038/455594a; Published online 1 October 2008

    Of particular relevance to this thread, might be the paragraph starting with “Autism’s False Prophets encapsulates the fanciful belief among scientists, not supported by those who research science communication, that understanding the science will inevitably tip the scales of public opinion.”

    (I’m not taking a stance on this opinion (yet!), just alerting people to the article.)

  49. Here’s my offering for re-framing….

    “Autism is a neurodevelopmental disability.” –
    expanding this. There are MULTIPLE neurogenic sources for the behaviors that are collectively named autistic.

    Discovery of treatments specific to the neural source of a set of behaviors would overshadow the vaccine-as-trigger mantra. (Oh, dear, what if there is a gastrointestinal source for the some of the behaviors called autism?)

    Emphasizing the COMPLEXITY of the nervous system – for broader consumption may help quell the idea of a single cause. Perhaps one child has organic differences in the cerebellum while another has a reduced corpus callosum.

    For near a century the diagnosis ‘cerebral palsy’ has been bestowed on individuals as varied as the number of viruses called influenza. Among therapists, CP is known as a ‘basket term’ – only marginally meaningful for understanding a particular child or predicting the child’s future function.

    Only recently is the neural source for motor impairment (CP) understood to a level that provides effective medical treatment.

    If autism does become a basket term – at least that will acknowledge the source(s) as unknown. That persons with autism behavior might not all have the same neural source might lead to acceptance that they all do not need the same medical or educational treatment. Not a comforting ideation, but also NOT representing autism as the result from a single (needle) source.

    For your consideration….

  50. #50 et
    December 31, 2008

    evet What I read is that contemplating treatment fidelity as a variable somehow makes the value of an intervention or research suspect. I can see that if it only works when under the control of a specific facilitator or under extremely controlled conditions or under a particular practitioner’s magic hands or clinic, or saying that the treatment is so individual that it eludes definition or replication, but treatment fidelity seems to be a pretty basic area to control for. thankss

  51. #51 sohbet
    January 5, 2009

    evet What I read is that contemplating treatment fidelity as a variable somehow makes the value of an intervention or research suspect. I can see that if it only works when under the control of a specific facilitator or under extremely controlled conditions or under a particular practitioner’s magic hands or clinic, or saying that the treatment is so individual that it eludes definition or replication, but treatment fidelity seems to be a pretty basic area to control for. thankss

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  77. #77 Türkçe Forum
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    Of course, there’s more going on in autism than just that, but the communication aspect is the one I know the best. :P

  78. #78 sohbet
    May 2, 2009

    ben: Living Marxism were originally a (very eccentric and cultist) Trotskyite group, but since the fall of communism their members have reinvented themselves as the worst type of unthinkingly and slavishly pro-corporate right libertarian.

  79. #79 resimler
    May 2, 2009

    Trotskyite group, but since the fall of communism their members have reinvented themselves as the worst type of unthinkingly and slavishly pro-corporate right libertarian.

  80. #80 sevişme
    May 2, 2009

    I’m not perfectly happy with how I’ve phrased #4. I want to get at the idea that social thinking (for lack of a better term) is learned behavior, and people with autism have a learning disability in this area. It’s not that people with autism can’t learn but that they perhaps require explicit, intense, direct teaching to learn in this dimension.

    This is close to what I’ve told some of the families I’ve worked with. (I’m a speech-language pathologist at a child development clinic, and because of the way the system is set up right now, I’m often the first professional after the pediatrician that a parent gets to see when they suspect autism.) Kids with autism don’t experience the world in the same way that typically-developing kids do, and some things that most of us learn effortlessly, especially social skills, don’t come easily to them. Since there’s a big social dimension to language acquisition, communication doesn’t come easily either. So, we have to explicitly teach those skills.

    Of course, there’s more going on in autism than just that, but the communication aspect is the one I know the best. :-)

  81. #81 seksi
    May 5, 2009

    Obviously, these categories are not mutually exclusive and are overlapping constructs. But they all share one thing: they really aren’t that effective in direct military conflict, particularly if protective mechanisms or vaccines are available to combatants. These weapons are mostly ‘useful’ against civilian populations and targets, many of whom simply will lack the resources to protect themselves. In the case of contaminating habitats, that’s little more than a vengeance weapon that would lead to increased barbarism from the other side

  82. #82 parça kontör
    May 5, 2009

    Obviously, these categories are not mutually exclusive and are overlapping constructs. But they all share one thing: they really aren’t that effective in direct military conflict, particularly if protective mechanisms or vaccines are available to combatants.

  83. #83 club penguin
    May 23, 2009

    I’ve been thinking of how it seems to have become almost equated with autism education, though it’s not always the appropriate teaching method. ABA has been best for Charlie when we’ve kept up a lot of questioning with the therapists and consultant.

  84. #84 resimleri
    May 23, 2009

    ben: Living Marxism were originally a (very eccentric and cultist) Trotskyite group, but since the fall of communism their members have reinvented themselves as the worst type of unthinkingly and slavishly pro-corporate right libertarian.

  85. #85 Sheila
    May 23, 2009

    Clear that neither MMR nor thimerosal have anything to do with autism? Now equipped with information to set people straight that vaccinations don’t cause autism?

    First off, it’s not the MMR shot causing the autism, and so conclusions extrapolated from those studies (such as the NRC’s 2004 study) to mean that no vaccinations cause autism is grossly absurd.

    Scientific studies are debatable when the conclusions to the studies done are invalid.

    How about being scientifically aware that vaccinations contain neurotoxins — by very definition of that word it means the stuff can poison the brain and cause brain damage. It’s just absurd to not recoginize the implications of neurotoxins causing autism, and also absurd not to recognize when a study has been improperly done to find that connection.

    I’ve yet to see a thimerosal/mercury study connected with the hepatitis shots that contained thimerosal. You know — the ones that caused my now 4-year old to be colorblind, but now after being on metal chelator for 9 mo., was no longer colorblind. (No surprise since mercury poisoning is known to cause colorblindness) The same ones that have maimed the muscles of my other 8-year old son throughout his body, who after being on metal chelator no more than 9 mo. can finally “magically” coordinate the muscles in his eyes after problems with it for 5 years. No other therapy was implemented beyond the metal chelator.

    That may not sound so scientific, but there is such a thing as preponderance of the evidence. And it actually holds more scientific clout than the NCR’s absurd conclusion to their study on MMR shots. (They may as well have studied lab rats and observed “they don’t chase cars” and concluded “Based on our study, there no connection that any animals actually chase cars” — and in reality we all know some dogs chase cars).

    It’s not the MMR shot that causes autism, it’s the hepatitis shot babies receive before they ever leave the hospital (unless they are Amish or something).

    I think most of us know that any good doctor takes a parent’s gut reaction (for lack of better words) into consideration. Doctors are trained to make that a part of their professional practice. When in history have so many parents grasped onto suspecting the same cause and been wrong? (And notice the parents who no longer think vaccinations caused their child’s autism, once upon a time did have the gut reaction that vaccinations were exactly the cause. It really isn’t that hard to psychologically and emotionally browbeat a parent into thinking their gut reaction is wrong — when you feel the whole world against you it’s actually probably healthiest for one psychologically and emotionally to give in — an elaborately cruel form of behavioral conditioning).

    I am to blame for my chioice to vaccinate my children. I KNEW there was a risk for autism because there are NEUROTOXINS in shots. But I understood those risks to be so low that when damages are done, our government can afford to compensate for damages. Not that I wanted damage to my children! I just thought the risk of being harmed by deadly disease far outweighed the risk of being damaged by a vaccination. I was wrong, and I am to blame. And the risk of being damaged by a vaccination with neurotoxins in it within a country where the vaccination companies or government (we the people) don’t take proper responsibilities for the damages — FAR outweighs the risk of being seriously harmed by an infectious disease a vaccination can prevent.

    “All Truth passes through three stages: First it is ridiculed; Second
    it is violently opposed; Third it is accepted as being self evident.”
    – Arthur Schopenhauer (1830)

  86. #86 hiphop
    May 24, 2009

    I’ve yet to see a thimerosal/mercury study connected with the hepatitis shots that contained thimerosal. You know — the ones that caused my now 4-year old to be colorblind, but now after being on metal chelator for 9 mo., was no longer colorblind. (No surprise since mercury poisoning is known to cause colorblindness) The same ones that have maimed the muscles of my other 8-year old son throughout his body, who after being on metal chelator no more than 9 mo. can finally “magically” coordinate the muscles in his eyes after problems with it for 5 years. No other therapy was implemented beyond the metal chelator.

  87. #87 Cilt Bakımı
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  88. #88 sohbet
    August 3, 2009

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  89. #89 porno
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    You know — the ones that caused my now 4-year old to be colorblind, but now after being on metal chelator for 9 mo., was no longer colorblind. (No surprise since mercury poisoning is known to cause colorblindness) The same ones that have maimed the muscles of my other 8-year old son throughout his body, who after being on metal chelator no more than 9 mo. can finally “magically” coordinate the muscles in his eyes after problems with it for 5 years. No other therapy was implemented beyond the metal chelator.

  90. #90 linux Hosting
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  91. #91 nanovor game
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    ‘ve been thinking of how it seems to have become almost equated with autism education, though it’s not always the appropriate teaching method. ABA has been best for Charlie when we’ve kept up a lot of questioning with the therapists and consultant.

  92. #92 mirc sohbet
    October 30, 2009

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  94. #94 sikiş izle
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    You know — the ones that caused my now 4-year old to be colorblind, but now after being on metal chelator for 9 mo., was no longer colorblind. (No surprise since mercury poisoning is known to cause colorblindness) The same ones that have maimed the muscles of my other 8-year old son throughout his body.

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  101. #101 mirc
    January 18, 2010

    You know — the ones that caused my now 4-year old to be colorblind, but now after being on metal chelator for 9 mo., was no longer colorblind. (No surprise since mercury poisoning is known to cause colorblindness) The same ones that have maimed the muscles of my other 8-year old son throughout his body, who after being on metal chelator no more than 9 mo. can finally “magically” coordinate the muscles in his eyes after problems with it for 5 years. No other therapy was implemented beyond the metal chelator.

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  103. #103 Electronic Cigarette
    August 17, 2010

    according to this “argument” by the anti-vaxxers – it’s alright to strap children down and amputate a part of their body, but not hold them down for a quick poke with a needle?

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  105. #105 Fussbodenheizung
    November 21, 2010

    I never heard of the correlation between vaccine and autism, it makes me worried about to give vaccine to my children. Thank you for the informative article and blog.

  106. #106 düzce iş
    December 1, 2010

    Of course, there’s more going on in autism than just that, but the communication aspect is the one I know the best.

  107. #107 tuz
    December 1, 2010

    Living Marxism were originally a (very eccentric and cultist) Trotskyite group, but since the fall of communism their members have reinvented themselves as the worst type of unthinkingly and slavishly pro-corporate right libertarian.

  108. #108 ateşli kızlar
    December 12, 2010

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  110. #110 skin tags
    January 12, 2011

    Is this kind of sickness can be cured? I don’t think autism can be cured through vaccine since it is a neural disorder. I guess it can be cured but not through vaccine.

  111. #111 temizlik şirketleri
    April 17, 2011

    Is this kind of sickness can be cured? I don’t think autism can be cured through vaccine since it is a neural disorder. I guess it can be cured but not through vaccine..

  112. #112 tütüne son
    April 26, 2011

    And where in the hell did he get a huge boat anyway, so young? I didn’t know being a GOP slime mold paid so well.

  113. #113 supratall
    May 1, 2011

    How about being scientifically aware that vaccinations contain neurotoxins — by very definition of that word it means the stuff can poison the brain and cause brain damage. It’s just absurd to not recoginize the implications of neurotoxins causing autism, and also absurd not to recognize when a study has been improperly done to find that connection.

  114. #114 sıcak videolar
    May 4, 2011

    I don’t begrudge Thomas’ announcement. Definitely read the “Autism’s False Prophets”, read the blog posts, listen to the podcast now or later. The more sources putting forth good information, the better. It all makes a refreshing change from some of the misinformation that I have been seeing for too long in the public eye and on the internet.

    Thomas, I just listened to your podcast–I’m no expert, but it sounded good.You know — the ones that caused my now 4-year old to be colorblind, but now after being on metal chelator for 9 mo., was no longer colorblind. (No surprise since mercury poisoning is known to cause colorblindness) The same ones that have maimed the muscles of my other 8-year old son throughout his body, who after being on metal chelator no more than 9 mo. can finally “magically” coordinate the muscles in his eyes after problems with it for 5 years. No other therapy was implemented beyond the metal chelator.

  115. #115 müzik dinle
    June 11, 2011

    It’s just absurd to not recoginize the implications of neurotoxins causing autism, and also absurd not to recognize when a study has been improperly done to find that connection

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