Sunday, July 23, 2006

Just Look At The Cured Kids

An argument that has come up often as of late is an appeal to acknowledgment of anecdote: "You refuse to look at all the cured kids." Let me be clear that I'd be happy to read any case reports of autistic kids who have been deemed recovered. Unfortunately, I have not been able to find such reports, particularly as they relate to biomedical interventions. The reports that do exist relate either to behavioral interventions or to no specified intervention.

It is important to acknowledge that loss of label does happen in autism, although not very frequently. For example, Szatmari et al. (1989) found that 25% of "nonretarded autistic children" had a very good long-term outcome and could be considered recovered. Note that the study was published in 1989, before ABA was available, and before any of the modern biomedical interventions became popular. Note also that in California, about 60% of all autistics (of all ages) registered with CDDS are "nonretarded". (Clients of CDDS classified as having autism are not supposed to be PDD-NOS or Asperger, but maybe some are). Therefore, we should expect that at least 15% of all California autistic children currently in the system will eventually be considered recovered.

That's a lot of children. And certainly these days most of them will have undergone some kind of intervention. It is not surprising then to hear of many anecdotes of children who have recovered thanks to some intervention.

My favorite case in point is Secretin. There was a Dateline show back in 1998 that told the story of Parker Beck, who was believed to have improved substantially after receiving a small amount of Secretin. I will quote a passage from the segment.

"In my book, Victoria Beck is a veritable hero," says Dr. Woody McGinnis, a general practitioner from Phoenix, Arizona. He was one of the first doctors to take Victoria and her discovery seriously. He now specializes in treating autistic children. He says that in his medical opinion, it's possible that a mother in New Hampshire has discovered a miracle treatment, maybe even a cure.


Dr. Bernard Rimland was one of the most enthusiastic promoters of Secretin as an autism treatment. I will quote him below.

Efforts are underway to increase the supply. The good news is that confirmatory evidence of the power of secretin keeps coming. A national newspaper told of Florida paediatrician Jeff Bradstreet's own four-year-old son, Matthew, shocking his parents by holding his first normal conversation with them the day after his first secretin infusion. And Virginia paediatrician Lawrence Leichtman told me of his "miracle case:" a five-year-old who had previously said only two words amazed all in the office by saying, 15 minutes after his infusion, "I am hungry. I want to eat." Most cases are much less dramatic, but the autism world is excited, and for good reason... The use of secretin appears to be the most promising treatment yet discovered for the treatment of autism... Judging from what we hear from physicians who have infused many cases (not from our SOS data) at least 75% (!) of their patients on the autistic spectrum show benefits from secretin, but we cannot yet identify a subgroup that does notably better or worse than the total group...


So what happened to Secretin? Many double-blind studies were done, as they should, and they consistently found no benefit from Secretin compared to placebo. In fact, some studies appeared to show a non-significant negative effect. The studies also documented for the first time how strong placebo effects are in autism. While some biomed researchers such as Bradstreet (and perhaps Dr. Rimland himself) still believe it is useful as an autism treatment, Secretin has fallen out of favor almost completely.

Research should go on, of course. But I suggest expectations should be managed, and claims of recovery rates should only be made after the double-blind placebo-controlled studies (preferably with independent replications) come back with results. As George Santayana says, "Those who cannot learn from history are doomed to repeat it."

19 comments:

  1. My husband would have been considered autistic. He didn't speak until he was 4 years old, and supposedly his first words were "You burnt the toast."

    My mother-in-law was frantic. I can imagine if he had been born these days...

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  2. I've mentioned this person before... when he was about 4 or 5 he was diagnosed with "childhood schizophrenia" probably some time in the early 1960's. He wouldn't interact with the teacher or the kids in kindergarten, but he made tiny bricks out of clay and built buidlings with them. His mom, when the doctor tried to pin the schizophrenia dx on the boy, picked him up and walked out of the office, totally rejecting the dx.

    Anyway, he had a sister a little younger and some time when they were preschool age (seems like there was another brother or sister in there somewhere, too), all the kids were in a bedroom or bathroom away from mom and it appeared that the kids were playing nicely because ... it was so quiet ...

    Parents know this is a bad sign, so their mom went to check on them. As she came upon them she heard the autistic/childhood schizophrenic(?) brother say, in a cheery voice, "Make more paint, Jenny!" (not her real name).

    Jenny was defecated, maybe she had diarrhea, and they were painting with it, all of them having a great time, apparently.

    My kids never did this, so it's a little weird, and apparently these kids only did it this one time, but its an interesting cross-section between the horrific tales of "feces smearing" and typical parenting tales of horror. Mine lean toward things like: my typical three year old kid somehow getting the car to roll down the driveway with him/her at the wheel out into the (not very busy) street and the car ending across the street with the back bumper just short of a split rail fence in front of the cross-the-street home. Good grief, talk about kids running into the street, my typical kid could have run another child over with my car! Or crashed my car into another car!

    Jenny grew up to be a drug addict and was/is homeless for some time. The boy who would have been dx'd as autistic grew up to be a pedantic sort of stiff person who owns a construction company in Hawaii and builds houses. He's married to a woman from another country (not unusual for autistics, I hear) and they have two typical daughters. A younger half-sister of those two has an ASD son who was dx'd by a regional center at age 11 1/2 or so as having "full syndrome" autism but seems to be pretty much like an AS kid in most people's eyes. I don't think he had a speech delay. He has a younger sibling who is 3 and has a serious speech delay, is barely talking now at 3+, but is not autistic at all, from what I can see. Their mom might be diagnosable as on the spectrum, certainly she's BAP, she has seizures and some minor tics.

    These are the people that the mercury lawyers and people like Lovaas don't want anyone to know about. The kid with the childhood sz dx never got any therapy, but he's passing for normal now. His autistic nephew slipped through the cracks with NO diagnosis, in spite of lots of problems in school, until age 11! He'd be held up as a cured kid now if his mom had gotten pulled into the mercury psychosis when he was little, not that they had any money for all the typical quack treatments, anyway. He had NO special therapies because he had NO diagnosis.

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  3. "Jenny was defecated, " make that, Jenny "had" defecated...

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  4. my typical three year old kid somehow getting the car to roll down the driveway with him/her at the wheel out into the (not very busy) street and the car ending across the street with the back bumper just short of a split rail fence in front of the cross-the-street home.

    I had crashed two cars by the time I was 4. True story. I tell my wife, monetarily speaking, our son is much less destructive than I was at his age.

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  5. In my gentle way, I'd really think that people who come forward with these anecdotal stories of great improvement should be taken seriously. I'm sure most of them were genuine stories, and there might be something in them sometimes.

    But that being said, there is no doubt that there are many children with ASD who improve without treatment. This should be better known, and raise a point of skepticism when people make claims of recovery.

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  6. I agree Jennifer. Anecdotes of improvement and recovery should be considered, with some healthy skepticism. There should not be any of this jumping the gun, such as Rimland's 75% improvement rate on Secretin.

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  7. Joseph,

    I mentioned this on another blog, but I think it appropriate to mention it here - there is a pilot study where two children moved off the autism spectrum as assessed by CARS by using the ketogenic diet for six months.

    Note that the authors use the words "children with autistic behavior" not "autistic children", and I wonder why.

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  8. They need to follow that up with a double-blind study. I'm not sure a placebo pill vs. a diet would be proper double-blinding in this case. That's a tough problem.

    The "autistic behavior" thing probably just means that these kids were somewhere on the spectrum. They don't specify any other characteristics. For example, it would be relevant if they preselected children with seizures.

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  9. And since there is no universally agreed marker, nay not even a paradigm of what the autistic spectrum is where it ends and who is on it. (Ask yourself equally in physical science where does the heliosphere end?)

    Human bias and ipsemesmerati

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  10. The 1989 study if done today might have found that the 4 out of the 16 autistics became "aspies" who function well, rather than "recovered". It's really a cultural perception that changes with the times. That's why the prevalence of autism keeps going up with no end in sight. Timimi explains it well: "The immaturity of children may be a fact of biology, but the meaning ascribed to this immaturity is a fact of culture." I also like this part: "We can and should do better than this relentless medicalisation of children and must become more competent at integrating medical theory with other perspectives, otherwise we will soon have a grown up generation of children (mainly boys) who have become unnecessarily convinced that they are somehow deficient and incapable." Timimi is quite reasonable for a psychiatrist :)

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  11. Re the "relentless medicalisation of children:"

    The Etiology & Treatment of Childhood

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  12. I suspect that cases of improvement are cases in which the child's environment accomodated the child's learning style. Nothing more, nothing less.

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  13. Thanks Anne. LOL. That satire piece has some hilarious nuggets:

    Folk wisdom is supported by empirical observation -- children will rarely eat their vegetables (see Popeye, 1957, for review).

    Unfortunately, some victims are so incapacitated by their childhood that they are simply not competent to work. One promising rehabilitation program (Spanky and Alfalfa, 1978) has trained victims of severe childhood to sell lemonade.

    Impressive evidence of a genetic component of childhood comes from a large-scale twin study by Brady and Partridge (1972). These authors studied over 106 pairs of twins, looking at concordance rates for childhood. Among identical or monozygotic twins, concordance was unusually high (0.92), i.e., when one twin was diagnosed with childhood, the other twin was almost always a child as well.

    As a counterpoint to such theories, some experts have claimed that childhood does not really exist. Szasz (1980) has called "childhood" an expedient label. In seeking conformity, we handicap those whom we find unruly or too short to deal with by labelling them "children."

    Twenty years ago, Howdi, Doodi, and Beauzeau (1965) demonstrated a six-fold increased risk of chicken pox, measles, and mumps among children as compared with normal controls. Later, Barby and Kenn (1971) linked childhood to an elevated risk of accidents -- compared with normal adults, victims of childhood were much more likely to scrape their knees, lose their teeth, and fall off their bikes. Clearly, much more research is needed before we can give any real hope to the millions of victims wracked by this insidious disorder.

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  14. I'm pretty convinced that the medicines my son's neurologist gave him helped his development. I mean, his vocabulary certainly increased, so there's that. But I can't say for sure because we forgot to procure and identical Jared for a control. =-)

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  15. Hi guys
    L Rex, don't use words like heliosphere too much. It hurts my head. ;^)
    See-I have a problem using a word like "cured" with my son. He is doing well, happy, funny and just started kindergarten. Is he cured? Nope. Have two years of public-school-provided speech and occupational therapy helped him? Absolutely! He is still very much autistic, but functioning well. I took a short video of him with my camera/phone while he was waiting for the school bus the first day. He had never "flapped" before, but now I have him caught on video. Personally, I saw it as an expression of unbound excitement and joy. What could possibly be wrong with him expressing these emotions in this fashion?
    Cured? No. Happy and healthy? A resounding yes! Have so many parents lost sight of what is truly important in a child's life?
    What a shame. They are missing the best part of parenting.

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  16. Mmm, the word 'recovered' is of course very problematic. Surely the child in question just grew up?

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  17. The word "recovered" is simply a consequence of the medicalization of autism. When a normal child learns to walk, you don't hear people saying that the child "recovered" from a handicap that prevented the child from walking.

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  18. Exactly! So when an autistic child gets older and acquires all kinds of skills they didn't have when they were younger, all that happened is they grew up.

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