JB Handley vs Bernard Rimland

17 Aug

Over on the Rescue Post (so named so people might think it has an air of authority similar to the Huffington Post – they call themselves ‘editors’ bless them), Brad Handley posts on spontaneous recovery:

Have you ever tried to talk to someone involved with autism from the “other” side about recovered children?

Typically, the conversation goes something like this:

Us: So you think autism is a genetic condition and biomedical intervention is quackery?

Them: Yes, exactly.

Us: But what about the children who are recovered, how do you explain them?

Them: Well, they may have been misdiagnosed…

Us: Well what about the kids who have multiple diagnoses saying they were autistic and have been re-screened and no longer have a diagnosis?

Them: Well…a certain percentage of autistic children do spontaneously recover, we know that’s true. They probably fall into this camp.

Us: They spontaneously recover? What does that mean?

Them: Well…they do normalize…we just don’t know why.

Us: But most of the parents of recovered kids can tell you exactly why they recovered – they have the tests, videotape, and first hand experience to walk you through it.

Them: Well, they may think they know why, but no one really does…

Us: Buttsmoochersezwhat?

Them: What?

Incredible. Over here in reality, the conversation goes something like this:

Them: So you think autism is a genetic condition and biomedical intervention is quackery?

Us: No, we think its largely genetic but with a probable environmental aspect. We also think some biomed intervention is quackery, especially that which maims, hospitalises, kills and claims to cure autistic kids.

Them: Oh….um…er….ah- but hang on – vaccines are environmental therefore we win! Ha!

Us: You do realise that the word ‘environmental’ and the word ‘vaccines’ are not interchangeable right?

Them: Huh? Yeah, but….OK, lets go back to recovered kids. But what about the children who are recovered, how do you explain them?

Us: Define ‘recovery’.

Them: Kids who have multiple diagnoses saying they were autistic and have been re-screened and no longer have a diagnosis.

Us: OK, well, how many of the ‘success stories’ on the Gen Rescue site (for example) claim that their kids no longer have a diagnosis of autism?

Them: Hmmm?

Us: You heard us.

Them: Er, well – 7%

Us: 7%!!!!

Them: Yeah.

Us: Isn’t also true that Kevin Leitch managed to get his ‘low functioning’ (to use your phrase) autistic daughter registered as a ‘success story’ on the Gen Rescue website by changing only her name?

Them: Yeah.

Us: Good grief.

Them: Well, they didn’t just spontaneously recover! that doesn’t happen! Spontaneous recovery? How dare they make light of hard work by parents and miracles by their kids.

Us: Really? Here’s DAN! Founder Bernard Rimland: “Mysterious spontaneous recovery. It hasn’t happened often, but it has happened often enough for the phenomenon to be worth noting: over the past 25 years I have received a handful of letters from parents which read something like this: “Please remove our address from your files. Our child has continued to improve so greatly—we don’t know why—that now he is no longer considered autistic”.

Them: Buttsmoochersezwhat?

Us: Grow up you silly sod.

17 Responses to “JB Handley vs Bernard Rimland”

  1. Joseph August 17, 2007 at 14:16 #

    The following was posted on EOHarm by a biomed mom 🙂

    ———- Forwarded message ———-
    From: anacat_11 [address deleted]
    Date: Aug 16, 2007 4:20 PM
    Subject: [EOHarm] Re: Spontaneous Horsepucky at The Rescue Post
    To: EOHarm@yahoogroups.com

    Before anyone jumps all over me, just bear in mind that I’m notcontending this for the same reason that some AS would. I’ll writethis and then back slowly away from the keyboard: I’ve seenspontaneous recovery. I imagine it’s an aberration. I’ve reportedthis before. And no, I don’t have visions, don’t drink, don’t haveDT’s and don’t drop acid. I also wouldn’t have believed it if Ihadn’t seen it. Was it really and truly spontaneous? Were the two girls in questiontruly autistic at any point? Beats me. Maybe the family are closetaltmed and lying about it, but I doubt it. The older sister, at twoyears old, wasn’t talking except for echolalia, toe-walked and spenthours looking at her hands and having tantrums so violent that theirmother used to stand on the front porch so neighbors could see shewasn’t inside performing an exorcism on the girl. She would self-injure. The parents had the girls in EI until three but, by then,both seemed to be losing the dx and were mainstreamed instead ofbeing placed in the recommended PDD program. I know the parents didn’t do any deliberate DAN treatments,certainly not GF/CF. Those kids eat junk food, drink milk, evenconsume crap with aspartame out of aluminum containers. But last Isaw the family, the older sister, now six, was gorging herself oncrappy rainbow cake with Coolwhip on top and is indistinguishablefrom peers except in a few ways. She appears to be somewhat of aleader. You can see vestiges of injury by the shape of her head- thebulging forehead and slightly distended eye sockets of a child whoonce had encephalitis. It almost looks like dwarfism. Even with asort of strange appearance, the girl has lots of friends, speaksnormally- neither too much or not enough- is actually gifted inschool. She seems to have become more expressive over the past twoyears. She used to seem grumpy and terse, now she’s friendlier. Themom said that the lingering dx was “ADHD” of course. The youngersister is completely normal as far as anyone can tell. Her symptomshad never been as severe. I don’t know how this happened. The one thing I know that’s a littledifferent about the family is that the mom, in her late thirties, isso hyperfertile that she had to have her tubes tied. She also talksmore than anyone I’ve ever run accross, but is actually excessivelyconscious of social rules and regs, kind of a snob (inexplicable)and doesn’t seem to have limited interests. When she gets torambling about whatever, though, she gets a look in her eye like thepassenger in a car that’s going too fast. Not totally in control.She once said she thinks she has aspergers and adult ADD as thoughthese things were the new fashion. She believes the whole genestheory, but with the depth of someone who got the idea from Dr. Philor TV Guide. She and her friends scare the crap out of me. The whole family seems to consume everything out of tupperware. I’mstumped, but here’s my crazy mutant theories: Maybe the females ofthis family have weirdly high estrogen and it kicked in at somepoint in development (anyone know the hormone feedback system? Iforget). Or maybe BPA synthetic estrogens have a “protective”quality or boost excretion- while they’re destroying your body inother ways. I should ask the family if they’d like to be studied forscience. There may have been some unrelated treatment which did somegood for reasons that no one predicted or understood, but I don’tknow of it. So shoot me now, but I says it like I sees it.

  2. Joseph August 17, 2007 at 14:25 #

    In that same thread at EOHarm, Lenny writes the following:

    Where is the scientific evidence showing that anyone who once had autism, and now doesn’t, recovered spontaneously? To assert so is junk science. I would challenge any duckster (who goes quack,quack, quack in response to autism recovery) to demonstrate evidence of this spontaneity.

    I have my doubts about the phenomenon as well, given that a diagnosis/undiagnosis of autism depends on the opinions of a professional, not on medical tests, so bias is possible and difficult to account for.

    That said, see Szatmary et al. (1989). This is an outcome study of autistics who grew up before ABA, before all modern biomed woo, and before a broad definition of autism. But they looked at atustics with IQ in the range 68-110, and found that 4 out of 16 “had a very good outcome and might be considered recovered.” The found that autism severity did not predict outcome, but nonverbal problem solving did. They do not mention any other predictors of outcome.

  3. Leanne August 17, 2007 at 14:38 #

    It’s like they think autistic kids don’t grow up. My son matures every year, as does every child, but I don’t see it as ‘recovery’…I see it as growth. Even if years from now he was ‘indestinguishable’ from his peers I wouldn’t consider him recovered, I’d consider him an autistic adult…just as I would if he grew up to still be very different from his NT peers.

  4. Joseph August 17, 2007 at 17:18 #

    It should also be noted that to many of them (particularly Lenny Schafer, and I would include Harold Doherty, even though he’s not really part of that group) a child is no longer autistic if they have good speech. Under that assumption, about 50% of all autistic children eventually recover on their own, per Kobayashi & Murata (1998).

  5. Lisa August 17, 2007 at 21:13 #

    About “spontaneous recovery” — back in June, I was at my son’s special needs preschool filling out a questionnaire along with other parents. I got to talking with another mom who’s son “played” with mine. Her son had been diagnosed with autism. At the end of our conversation, her son comes up and is ready to leave, and she makes the comment to me and the teacher, “to think they once said he had autism! He’s perfectly fine now!” And it was true. This boy who did not speak in logical sentences before, could now converse on his own, actually played, back-n-forth played (i kept my eye on him in future visits so I could scrutinize that they had missed something) with other kids, very compliant. This mom never did biomed – just your normal speech/ot, no ABA program, nothing else. How the hell did that happen? I wouldn’t have believed it if I hadn’t been watching the kid for the past 2 years. IMO, there are some things that just defy explanation.

  6. dkmnow August 17, 2007 at 22:42 #

    Re: “recovered”…

    Why does the phrase “Neurotypichausen’s By Proxy” keep popping into my head?

  7. Matt August 18, 2007 at 00:54 #

    “Predictors of Optimal Outcome in Toddlers Diagnosed
    with Autism Spectrum Disorders” J Autism Dev Disord (2007) 37:98–107

    Luckily, this one is free online…

    The abstract states:

    Results support the idea that some toddlers with ASD can lose their diagnosis and suggest that this is difficult to predict.

    I haven’t read the whole thing, but they have 13 kids who moved off the spectrum from age 2 to 4. I searched the paper for “mercury”, “chelation” and “diet” with no luck.

    These kids are rare. But, this would be a good reason why actual studies need to be done, rather than depending on anecdotal accounts.


  8. brook trout August 18, 2007 at 01:36 #

    My girls were considered moderate/severe at 3.0. Their language tested in the “disabled” range, their IQ in the MR range, and they needed a full time aide in developmental preschool to deal with their behavioral issues. Two years later, they are off to regular kindergarten this fall – still ASD, but they’ve come a long ways.

    Here’s one of my girls are four years, nine months:

    [video src="http://s120.photobucket.com/albums/o192/batfish00/?action=view&current=e3f13a44.flv" /]

    I think I could put together a “recovery” video that would match most of what’s on Neubrander’s site of whereever else they post these things. If I had been involved in heavy duty therapies for the past two years, I’m sure I’d be a true believer, too. It’s amazing how fast these kids can progress sometimes – most of this language and cognative development occurred within a single year (3.5 to 4.5).

    I’m not knocking any parent who’s reading this and really believes that biomedical therapies are working for them, btw – I don’t want to question anyone’s reality, especially fellow parents of disabled kids.

    I do think it is important to understand (and see) the kind of progress that autistic kids can and do make even without heroic interventions, just to keep things in perspective.

  9. brook trout August 18, 2007 at 02:08 #

    This isn’t just a tendency of biomed parents either, btw. I know parents who do attribute all of their kids progress to educational therapies as well – ABA, floortime, RDI, whatever. It seems that most parents want to believe that it’s something that they’ve provided for their kids that are responsible for all of their progress rather than just acknowledge that, while the interventions may have helped, there’s really no way to know how much the kid would have progressed on their own with just common sense parenting, healthy diet, and life experiences.

  10. Joeymom August 18, 2007 at 03:31 #

    Just so you know- the “grow up you silly sod” line had a little party of us here ROLLING with giggles during break.

    My Joey is doing very well. What we’ve got him doing is working for him. We’re ecstatic. But we have certainly noticed that what we do (school, OT, speech, some ABA, music lessons, and plenty of field trips) isn’t working for some other kids. We all have to look at all the tools for support, and see what is going to support our kid(s), and come up with the unique combination that meets their needs. I’ve yet to see the magic bullet that can be used with everybody to teach and support any and every one.

  11. notmercury August 18, 2007 at 21:42 #

    Wow, just took a look at ‘Rescue Post’ and I’m having a hard time believing that Kent is a “Beloved Science Teacher.” Does he teach preschool science? Dear God.
    He doesn’t know how RNA drops work but he knows that they do. Plus his daughter is excreting 25x normal levels of Uranium.

    Someone needs to monitor that classroom.

  12. isles August 18, 2007 at 21:45 #

    To add on to Matt’s point, it’s not like there isn’t research out there on the long-term prospects of people with autism. One that I just finished reading is “Trajectory of Development in Adolescents and Adults with Autism” by Seltzer et al. in Mental Retardation and Developmental Disabilities Research Reviews 10: 234-247 (2004). From its conclusion:

    “Future research is needed to learn more about the 10-15% who seem to become symptom free.”

    I would add that with today’s emphasis on early diagnosis, many children are being diagnosed and then perhaps undiagnosed before they would have even entered the catchment ages for the papers reviewed in Seltzer’s paper. So in the current environment, I would not be surprised to find out that more like a quarter or more of kids who ever receive an autism diagnosis eventually lose it.

  13. David N. Andrews M. Ed. (Distinction) August 19, 2007 at 11:28 #

    I had a look at that load of bollocks too.

    JBJr hasn’t realised that people tend to die more after a certain age….

    What a total pillock.

  14. anonimouse August 22, 2007 at 05:08 #

    I was diagnosed as autistic as a child. I didn’t talk until I was well past three years old, repetive behaviors, the whole bit.

    I am probably on the fringes of the spectrum at best today.

    I do believe that is certainly possible that young children who are diagnosed early may evolve into adults who function well in “normal” society and are (to be trite) mostly undistinguishable from their peers. The development path for autistic children is so varied it is nearly impossible to predict outcomes.

  15. Ms. Clark August 22, 2007 at 07:17 #

    “He doesn’t know how RNA drops work but he knows that they do. Plus his daughter is excreting 25x normal levels of Uranium.”

    Now if it was **me** I’d be having those RNA drops checked for uranium.

  16. Jon August 22, 2007 at 13:54 #

    am I missing something here – how would a child build up problematic uranium levels in the US? Apart from RNA drops, that is 😉

    I’m aware that uranium is maybe potentially a problem in areas where lots of DU munitions have been used…but aside from that, where’s the uranium meant to come from…

  17. Steve D August 22, 2007 at 15:34 #

    Okay, maybe this is just me since my kids are still in preschool TV-watching range, but…..
    Whenever I hear Rescue Post, I think of the Diego (from Dora the Explorer) “Rescue Pack” song…

    “Theeee Rescue Post …. Coming to the Rescue!”

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