The Myth of Recovery

1 Sep

Back in August of last year I wrote a blog entry about the Generation Rescue ‘recovery’ stories and how true recovery actually accounted for 5% of the stories on their website which I upgraded in May of this year when they redesigned their website. Their true recovery figure now stands at 7%. I even recounted how I sent my own daughters details to them under an assumed name using the exact truth about her state and condition which they duly published.

I was interested to come across some more fascinating dialogue between members of the Yahoo ABMD group – a group which believe mercury caused their kids autism and Biomed can help them. This is one of the oldest and most well regarded (amongst the mercury militia anyway) Yahoo groups.

The conversation began thusly:

From: Eva family
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 6:29 AM

the other thing that troubles me about all the “autism doctors” is that
no one seems to do any studies based on their patients. Some doctors
must have dozens of patients but there seems to be no published work
correlating their levels of minerals, reactions to diets, success of
treatments

…………

But in general J McC, Yasko etc, Buttar, the zeolite-people earn lots of
money and publish nothing except opinions………..followed by
anecdotal acclaim from those for whom they work and silent despair from
those for whom they don’t.

Being an experienced reader of the material on these groups, I silently commiserated with this poster as I waited for the inevitable flame fest. But it never happened. Here are some of th responses this post received from other ABMD members:

From: Laura K. Fischer
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 4:34 PM

Sally, this has always been a concern of mine also, I honestly don’t know whether some of these alternative doctors have any better of a percentage record in improvements then say some of the better mainstream neurologists prescribing meds or even in comparison to kids who only do therapy and educational intervention. Although I recognize that part of my skepticism probably stems from the fact that most of the kids I personally know who have done a lot of biomedical treatment (those in my local community) don’t seem to have improved any more rapidly than those who did not, there are a couple who are even worse off. There is no clear advantage that I have witnessed with my own eyes and it may be that it is because there is a tendency for many of these families to have used a couple of the same DAN doctors in this region, I recognize that this could be a contributor. But I do share your concern with this….Laura

From: Lawrence G. Leichtman, MD
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 6:40 PM

I have followed about 100 children with autism doing biomed. I have never seen a single “recovered” child if by recovered you mean normal though 8 of
the children were claimed to be recovered by their DAN doctors. I have wseen about 10-15% improved kids, some slightly and 10% of kids who were
actually worse from biomed. Of my patients using Yasko prescribed treatment alone I have seen 0 improvment out of 12 patients. I still don’t know what
works or why and this is after 10 years of doing this.

The response from Leichtman is a bombshell. If you do not recall the name, he is the doctor who was quoted in Dan Olmsted’s Age of Autism pieces as treating Amish kids (who never have autism – heh). According to his (anecdotal) opinion he has never seen a recovered child out of the 100 he has seen who have been doing biomed, even amongst those whose DAN! claimed they were recovered. Fascinating.

From: Gina Mouser
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 7:45 PM

We were seeing a very famous DAN dr. who told us that of all the 5000 plus
patients that the DAN doctor was treating, my son was the ONLY one that is
not improving.

Go figure..

Gina

This shed’s some light on the way DAN! quacks falsely inflate their patients parents with hope or a ‘convincing’ explanation. Except, judging by the tone of this email, this mum isn’t convinced.

One of the responders went on to question why Dr Leichtman was a member of the ABMD board if he didn’t believe in biomed. He reiterated his position and confirmed his belief that DAN! docs either lie or are mistaken:

I have seen positive results 10 to 15 percent is still better than 0. I just don’t believe in the total recovery claims as several of my patients were claimed to be recovered by their DAN doctors but they weren’t.

The original poster chimed back in later….

In the UK in education we have something called “value added” — this is the amount that a school has done for a child over and above what might have been expected by simple development. I would like to autistic children measured and placed at a point on a graph as they come into a
doctor (this is already done as I understand it) and then measured again after set periods. Over time that would set baselines and it would be
possible to see which doctors/treatments were giving “value added”.

I don’t understand why no one is doing this. Surely anyone genuinely “recovering” children would be all over us with data, analysis etc — so
that their achievements could be recognised, replicated and they (the doctor) could receive universal praise.

Quite. A point some of us have been making for quite some time.

Then of course, someone finally did play the PharmaShill card at Dr leichtman:

From: Marisha Taylor
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Tue, Aug 28, 2007 at 3:12 PM

I think the “confusion” is coming from you trying to turn the outcome of the study to what “you” want it to be. You & the pharmaceutical
guys would get along great -how much are they paying you on the side? Thank God you are having problems getting it published – there is no
more space for flawed studies.

The most fascinating thing about this post was the speed and weight of the responses telling her to shut up. Not what I would be expecting at all.

As part of the responses Dr Leichtman dropped his second bombshell:

I don’t even understand what you are asking. Neurotypical is average for a child their age not with sensory issues, not with hyperactivity, not with behavioral disorders. I do not include those that I really don’t believe nor does my neurodevelopmentalist believe has autism despite coming in with that diagnosis. *I see plenty of children who come in with the diagnosis who don’t have it in the first place* so improvement or not may not be valid for their issues.

This was unbelievable stuff. Straight ‘from the horses mouth’ was the seconding of the opinions that a lot of us had held for years. That some ‘recovered’ kids were never really truly autistic to begin with. I would love to know if Leichtman ever saw the Berle’s.

Anyway, as I mentioned, when Leichtman was accused of being a Big Pharma shill, the entire group sprang to his defense, including Holly Bortfield, a well known mercury mom.

From: Holly Bortfeld
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Cc: *******@aol.com
Date: Tue, Aug 28, 2007 at 3:24 PM

Wow, time to back off Marisha. Dr. L is a valued member of this list and you are out of line.

Bortfeld is a fascinating case. Later on in this discussion she says:

I know people who did only a few things and their kid is recovered and I know people who did EVERYTHING and their kid is still severe. While I do know some, they are very few in comparison, kids that are recovered. That sucks.

…………

I am thrilled for them, but my kid isn’t one of them (recovered) despite having the best of the DAN docs, virtually unlimited therapies and the “best” of everything, regardless of money, he’s still screwed up at 12 years old.

‘Screwed up’? Nice. This post was in response to the owner of the ABMD group’s post when she said:

I believe (and I’ am very cynical at this point) that most stories of “recovery” are the result of a misdiagnosis, or a mispresentation of
the facts for some financial gain.

Wow. Just….wow. These are incredible things for a ‘mercury militia’ group to be saying. If you only heard Gen Rescue etc you’d believe Brad’s oft-repeated claim of thousands of recovered kids. Its amazing to know that people of the same essential belief differ so wildly.

But back to Bortfeld’s screwed up non-recovered son. Her stance is peculiar given that, back in 2001, she was part of a discussion on the ABMD list during which she said:

Each time we deal with one of his medical problems, the features that gave him the autism label reduce. So in my mind, if we heal enough of his body, the autism dx won’t apply anymore. He went from severe (62 on the CARS) to mild (29 on the CARS) with diet and secretin. The last CARS they ran on him was a 22 so that technically doesn’t even qualify him for the autism label anymore (CARS is from 30-60) but I keep the label for services.

So which is true? That her son is ‘still screwed up’ and isn’t recovered? Or, back in 2001, that he doesn’t qualify for the autism label anymore? Interesting confirmation that Rescue Angels falsely hang on to diagnosis just to receive services as well.

I talked recently about denial. Is this discussion evidence of the rift in the mercury militia between those who have moved past most of their denial and those who can’t? Is it evidence that DAN! doctors know exactly how to play on the hopes and fears of these parents? I think so.

88 Responses to “The Myth of Recovery”

  1. Synfonia September 16, 2007 at 02:36 #

    Curt Worden,
    I have a child who was originally diagnosed as moderately disabled on the autism spectrum. Through a variety of biomedical approaches (mostly vitamin supplements) we saw my child grow into a wonderful, blossoming kid, with only residual language delays. Almost recovered, you might say. But then, we tried dropping the supplements one by one. And you know what? There was no decrease in the progress. No regression at all. Don’t underestimate the power of time to change a child.

    I hope you know that with the broadened diagnostic criteria, children today are being diagnosed with ASD who would never have received that diagnosis 15 years ago. And since their symptoms are milder, and/or less numerous, it is sensible to conclude that they may do well as they mature. But parents are still being told the old, historical “facts” about autism, which include the 90% retarded, 90% winding up in institutions garbage. So, to those parents, after hearing the worst prognosis, any sign of progress is like a miracle.

    So, is Dr. Bock planning to publish some of his work with ASD kids in the peer-reviewed literature?

  2. Ms. Clark September 16, 2007 at 03:43 #

    Why do scientists bother with documenting what they are doing in peer reviewed publications when they can hire Mr. CWFM to flog their viewpoints on DVDs? I mean, the peer review process is just so last century isn’t it? [/sarcasm]

    And slander doesn’t come from a keyboard, by definition. Propaganda, now that could be recorded on videotape, right?

  3. 666sigma September 16, 2007 at 13:35 #

    A STORY OF RECOVERY

    I felt compelled to tell you about a story about a “recovered” child. It is about my son.

    Our son has officially lost his PDD-NOS label. He is still behind in his speech development, but he catching up and he shows no other signs of autism. He attends pre-school and has generally been a model student. His understanding is definitely beyond his communication level. He will continue to receive help with his language development until he is fully caught up.

    The developmental neurologist that made the official diagnosis said he would never know that he had a PDD-NOS diagnosis if he had not seen him 7 months ago, but he assured my wife that he was definitely on the spectrum 7 months ago. He called our son “one of his most remarkable success stories” even though he really had nothing to do with it. She said he had tears welling up in his eyes, which is unusual for a doctor. Seven months ago, he discouraged my wife from even talking about recovery. He told her that we were a long way from even going there.

    I attribute most of his progress to ABA therapy. My wife says its the combination.

    He is on the GFCF diet and when we allow him to eat dairy (and he loves diary); he becomes hyper, less communicative, throws tantrums and starts to stim. It seems to take a couple of days to get back to his normal cheerful self after eating diary. We have witnessed this on multiple occasions.

    We also took him off his vitamin supplements this past summer and the same thing happened. He is now back on them. We have not, however, noticed any similar reaction when he has been given gluten. He simply prefers the bread now.

    I echo the comments of another writer on this board. The definition for ASD has been pushed so far and so wide that many of these kids would not have been diagnosed 10 or 15 years ago. They will tend to be at the milder end of the spectrum. You can label it whatever you want – recovered, cured, remediated, high functioning, misdiagnosed, etc. It’s just a label.

    What it means to a parent is that your child is going to grow up to be a happy, productive and independent member of society. That’s exactly what parents think they have lost when they hear autism. So, in a way, it is recovery.

    It is my belief that the biggest mistake a parent can make is to lose hope and do nothing. For us, bio-med seems to be real. It seems to help with focus, but it is not a cure. The second biggest mistake a parent can make is to think that there is a magic pill and everything is going to change overnight. It won’t. It takes time.

  4. Kev September 16, 2007 at 16:36 #

    Sigma, are you saying that your son was diagnosed as PDD-NOS and then after 7 months he lost his diagnosis?

  5. 999epsilon September 16, 2007 at 19:52 #

    _”What it means to a parent is that your child is going to grow up to be a happy, productive and independent member of society.”_

    And you’ve got that in writing?

  6. Ms. Clark September 16, 2007 at 20:07 #

    I think being a parent means giving birth to the perfect kid who will grow up to marry the perfect spouse and produce the perfect number of perfect grandchildren for the family line, with not one having any defects… or that’s the eugenics view of what it means to be a parent.

  7. 666sigma September 16, 2007 at 23:12 #

    Yes. In December 2006, he received a diagnosis of PDD-NOS from a well known and respected developmental neurologist. In July 2007, he removed the diagnosis.

    At 3 years and 2 months, his language development was assessed at below 2 years of age for both receptive and expressive. He is now almost age appropriate for receptive language, but his expressive language is still behind. He’s gaining about 2 months for every month. He rarely stims or throws tantrums. He is a model student. The chicks dig him. In academics, his teachers say he’s the faster learner in the class.

    We are also blessed that his younger brother is extremely advanced for his age.

    In my opinion, ASD seems to be a catch-all for many developmental delays and/or LD’s. The diagnosis is not even scientific. It’s a friggin’ laundry list.

    BTW, I enjoyed the comments from your readers who don’t want to believe that “recovery” is possible.

  8. 999epsilon September 17, 2007 at 02:08 #

    _”I enjoyed the comments from your readers who don’t want to believe that “recovery” is possible.”_

    Don’t be so sure of that sigma666. Although the word “recovery” is too loaded and fraught with the potential for mis-interpretation for my taste, I am personally very familiar with, shall we say, the concept of constitutional restoration … among other things.

  9. Matt September 17, 2007 at 03:25 #

    Read again,

    the “myth” is not that recovery is possible. The “myth” is that you need biomed to do it.

    My doctor has about 40 autistics in his care–all ages. He has at least one who has lost his diagnosis. Read–“recovered” in some circles’ language.

    No chelation, no diets. Just a lot of hard work and a kid who had it in him.

    Congrats on your success.

    One of the arguments people make is that perhaps the kid was misdiagnosed.

    You seem to be supporting that notion:

    In my opinion, ASD seems to be a catch-all for many developmental delays and/or LD’s. The diagnosis is not even scientific. It’s a friggin’ laundry list.

    Matt

  10. 666sigma September 17, 2007 at 04:34 #

    I attribute almost all of his progress to ABA – positive reinforcement. Contrary to many of the views expressed on this site and others, I have never witnessed torture.

    In our case, biomed seems to have helped with focus. Right now, he is really on a diary free diet because we do not intentionally limit his gluten intake.

    I don’t think it is fair to lump all biomed into one category. GFCF is not the same as chelation. Vitamins don’t equal lupron.

    I think it is wrong to say kids don’t “recover” even if you think it’s a misleading term. You can call it remediation or whatever you want.

    Based on my very limited experience, I think early intervention to help with communication delays is important before non-productive habits get too ingrained. That is my unscientific opinion.

  11. Joseph September 17, 2007 at 15:52 #

    You can call it remediation or whatever you want.

    If you call it remediation, that means something is known to remedy it. The fact is that no treatment has ever been proven to cause remediation, not even ABA.

    Even the children Kanner saw 50 years ago had a “recovery” rate similar to that found in the most recent adult outcome studies. There’s no convincing evidence that “treatment” is changing this. (Certainly, there appear to be things that can be done besides treatment).

  12. Kev September 17, 2007 at 22:37 #

    _”I don’t think it is fair to lump all biomed into one category. GFCF is not the same as chelation. Vitamins don’t equal lupron.”_

    I totally agree with that.

    Personally, I don’t think its too surprising that some autistic kids improve on special diets. If we say that – just like the non-autistic population – autistic kids can have stomach issues, then improving those issues will make it easier to teach/educate them.

    The interesting question for me is: do autistic kids have gastric issues at a higher rate than non-autistic kids?

  13. 666sigma September 17, 2007 at 22:41 #

    The lack of proof does not mean that it is not a fact.

    You have 2 choices. Do something or do nothing. We chose to take action and our child has lost his diagnosis.

    Not only has the developmental neurologist refered to our son as one of his most remarkable success stories, the developmental officer at his preschool told us that she has never seen a child with PDD-NOS make this kind of progress.

    No one will ever know the outcome for the path that we did not take. We chose the path that people such as yourself said would not work and it has.

    My personal observation is our son can be taught. Somethings do not come naturally to him. The more he learns, the more gaps he can fill in on his own. His sensory issues have improved greatly and it does appear that some of it is related to diet. No facts. Just observation.

    With the current definition of the spectrum, I suspect that you will be seeing a lot more success stories in the future. Most of them will be due to early intervention and the parents that waited will realize that they made a mistake. I would not want to trade places.

  14. Kev September 17, 2007 at 22:52 #

    _”With the current definition of the spectrum, I suspect that you will be seeing a lot more success stories in the future. Most of them will be due to early intervention and the parents that waited will realize that they made a mistake. I would not want to trade places.”_
    With all due respect, I’ve been hearing that for the last four years and so far you are the only one has come back and reported success. We tried ‘early interventions’ and they did squat.
    Please understand that I’m not dissing you. I’m simply suggesting that you almost certainly fall into that ‘handful’ of spontaneous recoveries’ that Bernard Rimland defined. The fact your son was recovered in 7 months certainly backs that up for me.

  15. Joseph September 17, 2007 at 23:17 #

    I’ve been hearing that for the last four years and so far you are the only one has come back and reported success.

    Well, that’s an overstatement, Kev. If 666sigma had been coming here 2 years ago talking about his autistic child and the treatments we was trying, and then came now saying, “You see, it worked!” that would be more impressive than what’s happening now, which is simply that someone showed up with one more story about their purportedly recovered child (there are no doubt thousands of parents in that situation, so what does it tell us that one of them showed up here in this blog?).

    666sigma: I see no evidence that curebie-ism pays in the grand scheme of things, to be honest. See my analysis involving all the major curebies: here. Of course, there’s no reason why you should care about these arguments one way or the other if your kid is in the 10-15% of autistic children who apprently recover. You can forget about the autism community altogether. (Some advise for the future though: Do note that standard evaluations don’t tell the whole story; I have no doubt that there are bright autistics who can score very well in standard evaluations).

  16. HN September 18, 2007 at 00:14 #

    Hey! I have a recovered child! His use of language was inappropriate for his age when he just turned three years old.

    After just a year of intensive language therapyfor a year from student clinicians at the local university, plus a couple of years visiting a school speech therapist his language use was pretty normal.

    Of course, he was not diagnosed autistic. He was diagnosed as having dysphasia, which is more often called “late talking”. He may have actually been able to progress without any therapy, but he was child #2 and his odd use of language was noticed by the speech therapist treating child #1 (who eventually had over 10 years of speech therapy, and still has some expressive language problems and learning disabilities).

    He is presently a 17 year old high school honor student, with lots of friends, is active in marching band and is also a lifeguard.

    Yet, if he were three years old now with his odd language someone might guess he was autistic with the broad brush that diagnosis is now used with.

    The point is that not every toddler with a language or speech issue is autistic. Not every preschooler who uses neo-linguistic jargon is going to become “normal”, but some will. It just depends on being properly diagnosed by a properly trained person when the child is old enough!

  17. Asystematic Juan September 18, 2007 at 02:49 #

    “It is my belief that the biggest mistake a parent can make is to lose hope and do nothing.”

    It’s a good thing no one is advocating either of those.

  18. Ms. Clark September 18, 2007 at 08:03 #

    RJ666 wrote:”, the developmental officer at his preschool told us that she has never seen a child with PDD-NOS make this kind of progress.”

    Am I the onlly one who took this as the “developmental officer” saying that this child looked like no other PDD,nos kid he or she had ever seen, i.e. this was his or her subtle way of saying that the child never should have had the PDD,nos label, because he wasn’t on the spectrum to begin with?

    The younger a child is diagnoesed the greater the liklihood of a misdiagnosis. There are kids who flap and act odd, but who are not autistic, there are kids who have late speech but are not autistic. But as HN pointed out, they could get an ASD dx.

  19. 666sigma September 18, 2007 at 13:12 #

    Yes, Ms. Clark, you completely misconstrued my statement. My son was officially diagnosed at 3 years and 2 1/2 months. Is that too young for you?

    My son had delayed speech with his first words coming at 16 months. He banged his head, never felt any pain or had any fear, spun everything in sight, spun himself in circles looking out the corner of his eyes until he was dizzy, licked anything smooth or wet, rubbed his face on carpet and furniture, lined up toys, preferred to play alone, walked on his toes and did not say “Mommy” until 2 weeks after ABA started. But he could knock a 100 piece Thomas puzzle by the age 3. He knew the alphabet and could count by 2. The same was true of shapes, colors, etc. He was great at labeling, but he had difficulty putting together more than 2 words.

    Does any of that sound familiar to you?

    We filled out at least a 10 page report on our son before he saw the neurologist. My wife spent a couples of hours going over his background before he even saw our son. His assessment BEFORE he saw our son was that he was in the middle of the spectrum, which broke my wife’s heart. After testing our son, he indicated that he was higher functioning than he expect. It was obvious that he was a smart kid.

    I would not call his “recovery” spontaneous. It’s a lot of hard work. Basically, he is learning language almost through rote memory. We are fortunate. He is reasonably social. He does not have behavioral problems. Basically, he’s a very nice boy. I have no doubt that he is smart enough to fill in the gaps.

    When he turned 3 last year, he had no idea that it was his birthday and what it meant. We weren’t even sure if he would blow out the candles so I had him practice before the party (even then I was nervous). This year, he helped decide who would attend and who wouldn’t. We had to explain it to him, but he got it. We came full circle in one year.

    BTW, I read all of these comments for quite some time before I posted any comments. This is a private issue. You won’t see me going public with a story of recvery.

    However, my wife gave me the okay to relay our story because she doesn’t believe it is a myth. We are both kicking ourselves for not doing something about 9 months earlier.

  20. bullet September 18, 2007 at 15:10 #

    I hope your son had a nice birthday 66sigma :). My older son was three last year as well and like yours, he didn’t understand anything about birthdays. This year I don’t know how much he understands about them, but he sign “birthday cake” and sign and sing “happy birthday”. One of the loveliest moments we had recently was when his younger brother turned two and my older son was signing along to “Happy Birthday”. Like your son mine is very good at labelling and colours, numbers, shapes etc but his understanding of verbal language and using verbal language to communicate is very poor (plus he’s dropped a lot of the words he was saying) so we look for other ways to help him communicate as well as verbal language.
    I’m probably preaching to the choir here, but do you use photos and visual timetables to help explain things to your son? If he has trouble understanding spoken language still then having something material in front of him can often help a lot.

  21. notmercury September 18, 2007 at 16:34 #

    boy recovers. kicking yourself. Got it.

  22. Joseph September 18, 2007 at 17:08 #

    666sigma: Just out of curiousity, would you say your son is more or less recovered than the Berle kid? How about the Redwood kid? He’s a bit older but his diagnosis was also PDD-NOS.

  23. 666sigma September 18, 2007 at 22:16 #

    Joseph, both the Berle kid and the Redwood kid are older by several years.

    My son lost his diagnosis. He is mainstreamed in school without support and is a model student. His language improves on a daily basis. He is increasingly social and is one of the best behaved kids.

    Bullet, he is very concrete in his thinking. No shock there. But he retains what he learns and has been able to generalize. Sometimes, his choice of words and sentence structure are not correct.

    The use of visual aids is now being replaced with more abstract thought. I would describe his learning language kind of like an adult learning a second langauge. It’s very mechanical. It’s not natural. But he is smart enough that he will master it.

    Best of all, he loves to learn. He loves impressing his teachers and he likes to teach other kids. All god signs in my own.

    NotNice, apparently you have yet to master the nuance of language. Perhaps a little ABA would help you? It still amazes me that guys like you can’t stand hearing about someone else’s child getting better. Sad, sad, sad.

  24. Tom September 18, 2007 at 22:45 #

    666,

    I have an extremely hard time accepting that in the space of 7 months your very young child was dx’d and recovered. It is much more likely that your child was misdiagnosed. Glad your child is progressing but doubting in the extreme that there was a correct diagnosis to begin with.

  25. notmercury September 18, 2007 at 23:30 #

    Sigma,
    I’m always happy to hear about children who are doing well or “getting better” but I have no idea what you are trying to tell us about your son.

    From what I can tell, your son had some delays and now he’s catching up. Good news and good for him. Sounds like you are a good parent and you love your children very much but statements such as “We are both kicking ourselves for not doing something about 9 months earlier” imply, to me, that you wish to take credit for his gains or that other parents who have done more than you, and at an earlier age, are remiss in their parenting duties.

    Speaking of “not nice”, you’ve been a first class troll from your very first comment as Stigma666 so don’t expect warm hugs from me.

  26. 666sigma September 19, 2007 at 10:48 #

    THE MYTH OF RECOVERY IS THAT NO ONE RECOVERS

    Recovery or whatever you want to call it does happen. Now that the spectrum has been widened, it will happen more often.

    In my opinion, the earlier the intervention starts, the better the outcome will be. Based on my personal experience, I believe diet (GFCF) and vitamin supplementation can help some children focus better, which will help in the recovery process.

    From my limited experience, these kids are very concrete thinkers so that learning is done best in a step-by-step basis. ABA provides that, but don’t expect the school system to do this for you.

    That’s all folks!

  27. notmercury September 19, 2007 at 13:56 #

    Stigma666: “Recovery or whatever you want to call it does happen. Now that the spectrum has been widened, it will happen more often.”

    I think we are all willing to recognize that a significant number of children “recover” or whatever you want to call it. The myth is that it’s due to any number of interventions rather than a particular child’s normal course of development.

    “You won’t see me going public with a story of recvery.”

    Why not? Write a book, go on Oprah, shed some tears — be somebody.

  28. bullet September 19, 2007 at 14:09 #

    It’s good that your lad’s understanding has improved. How is he at initiating things and letting you know things? Eg would he tell you about school or do you have to ask him first? If he seems upset at something can he tell you why? If you’re out and he’s thirsty would he ask for a drink?

  29. Joseph September 19, 2007 at 14:49 #

    My son lost his diagnosis. He is mainstreamed in school without support and is a model student. His language improves on a daily basis. He is increasingly social and is one of the best behaved kids.

    How is he different from any child with an Asperger’s diagnosis? Better yet, watch this video of non-recovered autistic children (who probably have not done biomed all that much – my guess). What’s the difference? Let me suggest what the difference is. Some parents have a medical emphasis in how they view of autism and like to use words like “recovering”, “improving”, “recovered”. Other parents do not.

  30. 666sigma September 19, 2007 at 22:23 #

    Joseph, I have watched the video. It’s one of my favorites. The neurologist did not change his diagnosis to AS. That does not mean that he does not have deficits. He just doesn’t fit the AS laundry list.

    Bullet, at this point, it is still a mixed bag. Yes, he will ask for things he wants – all the time. He will tell you about things in the here-and-now. He still has trouble with past tense, but he is grasping future tense. 3-4 months ago, he could not have a conversation. Today, he can. He can tell you why he is upset. But don’t expect him to talk about how someone else feels. One step at a time.

    I guarantee that all of the naysayers on this blog, if you saw my son, you would all say that he’s autistic and he’s developing just like a lot of other autistic kids. The point is that he has developed to the point where he no longer fits the laundry list of DSM-IV for PDD-NOS, AS or any of the other PDD’s. How many of you can say that about your ASD child?

    It is my PERSONAL BELIEF that ABA is giving him the tools necessary to learn to communicate (in ways that the school system never will). It appears that diet and vitamins have improved his focus. I believe that we have positively affected his long term development by providing him with the necessary education at an early age.

    Education does matter!

  31. 999epsilon September 20, 2007 at 03:12 #

    _”… he no longer fits the laundry list of DSM-IV for PDD-NOS, AS or any of the other PDD’s. How many of you can say that about your ASD child?”_

    Well, I didn’t realize it was a competition. However, since you boast, er, ask: Several experts have suggested the same (ie no longer fits laundry list) about one of my young ASD family members, but that’s neither here nor there. BTW, Schadenfreude does not become you 666sigma.

  32. 666sigma September 20, 2007 at 21:17 #

    Joesph, thanks, I haven’t watched that video in awhile. I can see why the neurologist removed the diagnosis. He’s doing way better than all of those kids, except maybe one or two. His speech pattern is more fluid. Comparatively speaking, I think he would present himself more like ADD. But I can assure that his attention is exceptional. It’s all language.

    000epsilon, where was I bragging? What I think it boils down to is that you really don’t want to see or hear about kids improving using GFCF or ABA because it goes against your beliefs.

  33. Joseph September 20, 2007 at 21:41 #

    you really don’t want to see or hear about kids improving using GFCF or ABA because it goes against your beliefs.

    On the contrary, I love to hear stories of kids improving thanks to all sorts of treatments. I’ve written a lot about that recently in my blog. Lots of impressive testimonials. Check it out.

    Seriously though, I don’t want to hear about that just as much as a homosexual doesn’t want to hear about reparative therapy curing 30-70% of homosexuals.

  34. AngryMom September 21, 2007 at 16:15 #

    What about Patricia Stacey’s son? Her book is all about how she recovered her son using a combination of 7 hrs/day of Floortime and complete social isolation (of herself).

    The book definitely raises the question of whether he had asd at all to begin with. They refuse all kinds of medical tests and he never actually receives a diagnosis from anyone.

    Does anyone know how he is doing now? I guess I would expect to hear from her a little more now, especially since her book was promoted by O Magazine a few years back.

  35. HN September 21, 2007 at 17:24 #

    Angrymom, that reminds me of a really good book I read about the Doman/Delcato method. Doman was a physical therapist that promoted an intensive form of physical therapy. He usually promoted it by selling books with titles like “What To Do With Your Brain Damaged Child”. I checked a couple out from the library, and they were just long advertisements for his “Institute” in Pennsylvania.

    The author, a mom, created a special room and did many hours of exercises from the institute in Pennsylvania in hopes of helping her son with cerebral palsy.

    In the end, it really did not help… and she learned to accept her son as he was.

    She even used her research in getting a college degree. The last part of the book shows the research that pretty much shows what a sham “patterning” is.

    Here it is:
    http://www.amazon.com/No-Time-Jello-Berneen-Bratt/dp/0914797565/

  36. AngryMom September 21, 2007 at 17:56 #

    Thanks, HN! That sounds pretty fascinating.

    The Stacey’s were big into some sort of cranial-sacral therapy. I can’t remember the exact name of it. The practitioner told them on day one that their son had “toxic exposure, probably in the womb” and they spent the next two years keeping him in a perfect C-shape.

    It’s just a little odd to me that no specialist out of the myriad they saw ever saw fit to officially diagnose him. Yet he’s cured.

  37. Ms. Clark September 21, 2007 at 18:35 #

    “A still small voice” commented this about that book, HN:

    “An honest and thoughtful account of one parent’s growing disillusionment with the Doman/Delacato “patterning” therapy for her son with cerebral palsy. An effective counter-balance to the tendency of accounts of “miracle” alternative treatments to describe only the isolated “miracle cures” results and ignore with the far more common “failures”, it also includes an appended summary of the scientific research on Doman’s therapies which quietly and devastatingly demolishes the claims made for them.

    I totally agree with the previous reviewer that this book should be compulsory reading for anyone even considering Doman’s therapies, but it should also be relevant and interesting to a wider audience. **Bratt examines the complex psychological issues involved in the pursuit of a ‘cure” for a child with special needs – how parents are made to feel (and make themselves feel) that they are positively immoral unless they are willing to try anything that holds out even the faintest hope of a cure (at whatever cost), the costs of an exhausting and coercive treatment plan on the family as a whole, the psychological effect on a child of a treatment which implies so clearly that he’s not OK as he is and needs to be “fixed”, and the emotional consequences for both child and parents when such a cure fails to materialize and they finally have to accept the child’s disability as a permanent part of his life. *** At the end of the book, her description of her acceptance of Jamie as he is, disability and all, is deeply moving.

    Of course, a quiet and intelligent book like this will never win even a tenth of the readership of the sensational and mendacious books that sell the promise of miracles. All people who really care about children with special needs should regret this”

    Wow. Parents keep reinventing the wheel, and quacks keep taking advantage of parents in search of a cure.

  38. HN September 21, 2007 at 19:06 #

    Actually, after I read the book I did an AltaVista search on it (it was before Google). I found at least one site that showed Bratt’s book was part of the required reading in a hospital support group for parents with disabled children.

    Of course, I can’t find that anymore. But that book would be a good thing to give to any parent shortly after they get a diagnosis of some sort. Not just autism or cerebral palsy, but any of the several kinds of childhood disabilities.

    It certainly made me feel better after the frustration I had after reading a couple of Glenn Doman’s stupid books!

Comments are closed.

%d bloggers like this: