Recovered or Not?
When Jenny McCarthy’s book Louder Than Words: A Mother’s Journey in Healing Autism was published last September, all the talk was that she had “recovered” her son from autism.
In article after article about the “Green Our Vaccines” rally, it is said that that her son is “autistic” and “has autism.”
Just trying to get the facts straight.
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67 opinions for Recovered or Not?
Bonnie Sayers
Jun 7, 2008 at 4:12 pm
Yep I saw that in brochures where she is the keynote speaker and for the rally and wondered why the discrepancy.
I never read the book, looked through it or bought it - no plans to either.
Emily
Jun 7, 2008 at 4:23 pm
Maybe it’s supposed to be like alcoholism or other addiction, and he’s a “recovering autistic.”
Beth in Vegas
Jun 7, 2008 at 4:31 pm
I think it is simply a matter of Evan’s healing process continuing after the publication of the book..
The State came out recently and said that Evan no longer qualified for services for Autism.
He is no longer on the Spectrum. So that happened AFTER the publication, I would have to say myson was “recovered” as well, and no longer Autisic. I have read that Evan still suffers from seizures and other issues.
I don’t understand why this is even an issue.
Kristina Chew, PhD
Jun 7, 2008 at 4:45 pm
Back in September of last year the word was that McCarthy’s son had “recovered” and she cited various biomedical treatments, including a special diet and anti-fungal therapy for yeast.
Now in June of 2008 the word is that he’s autistic and it might be helpful is McCarthy clarified this.
There’s many “treatments” and “therapies” out there (some “alternative” others less so and some educational) that are promoted as having the potential to “recover” a child from autism—-so that the child “loses” his or her diagnosis. And some parents seem to try these treatments and therapies with as the aim.
If someone says their child is “recovered” from autism, much public attention goes to asking how and with what treatment etc.—–recovery from autism is a big business, but whether it’s possible to recover is not clear. Certainly many children make progress thanks to various treatments and therapies.
Linda
Jun 7, 2008 at 5:02 pm
She repeatedly dodged the question in an interview with Greta Von Sustern last night despite the repeated request for an answer to, “has your son been cured of autism” to which McCarthy seemed to imply that he is on the spectrum. I guess it would be bad for business if he were no longer autistic, having been vaccinated and all.
I wish this 15 minutes of “greening vaccinations” would end.
CS
Jun 7, 2008 at 5:08 pm
“The State came out recently and said that Evan no longer qualified for services for Autism.”
Please provide the link to that.
Disclosure of student records is a crime under a federal law called FERPA (Family Educational Rights and Privacy Act). A parent can disclose it, but the school can’t, even if the parent wants them to.
Kristina Chew, PhD
Jun 7, 2008 at 5:14 pm
And not qualifying for autism services does not mean one is not “autistic”—-certainly there are students we’ve known who have that designation and who are still clearly on the spectrum. Their diagnosis might be PDD or Asperger’s but they still have needs (and even into college, as I’ve found).
Cliff
Jun 7, 2008 at 5:39 pm
“Maybe it’s supposed to be like alcoholism or other addiction, and he’s a ‘recovering autistic.’”
Having had this rhetoric applied to me in part, this is exactly the mechanism one is supposed to be applied to. Now, at least mine was a little more consistent in its use (the typical term was “residual behavior”), but that’s basically what I’m seeing here. The thing is that, from my perspective, it’s particularly and horribly wrong. Evan, I am bound to think, is either going to be in a lot of self-denial or is going to have a very hard time getting his parents (parent? The only thing I’ve really read about Evan’s relationship with his father is that it is “good”, in McCarthy’s words)
I keep hearing that McCarthy’s son wasn’t on the spectrum, and I haven’t actually seen support for that. I’m also wary of the rhetoric, as it usually is a tactic of maintaining stereotype by exclusion. Don’t get me wrong; as I’ve noted, I hardly think that McCarthy’s conception of her son is correct. But I don’t think it is in regard to the spectrum.
Cliff
CS
Jun 7, 2008 at 5:40 pm
“A parent can disclose it, but the school can’t, even if the parent wants them to.”
I should clarify to say that a school will disclose those to certain individuals on the request of the parent, but a State Department of Education release to the general public would not be done.
Cliff
Jun 7, 2008 at 5:41 pm
Err… read “getting his parents (…) to understand.”
Kristina Chew, PhD
Jun 7, 2008 at 5:44 pm
I’m still looking for the link, CS.
Andrea
Jun 7, 2008 at 6:13 pm
I heard similar things when I went to the screening of Autism Yesterday. The entire documentary was based on five families who had recovered their children from autism, but to me it looked like their children had just grown and developed coping mechanisms for their particular challenges.
I could sya lots of things about Jenny McCarthy, but I’ll spare you.
codeman38
Jun 7, 2008 at 6:24 pm
Andrea: There’s a similar clip of “recovered” autistic children posted on YouTube by the Autism Recovery Institute. To me, the kids just seem like high-functioning autistics, but what do I know…
David L.
Jun 7, 2008 at 6:55 pm
Parents who think their autistic children are “recovered” are going to be disappointed. Jenny McCarthy’s son is still autistic, and will presumably keep on developing, something he most likely would have done anyway without all that intervention. Most “curebie” parents would consider us high-functioning autistics to be as good as cured. Maybe most of these parents don’t really want to exchange their autistic children for NT children, but rather want their children to have satsifying lives. At least, that’s my hope…
Club 166
Jun 7, 2008 at 9:03 pm
Jenny was jumping all over the board last night in the interview with Greta. She used “recovered” and “recovering”, then seemed to say that he was still autistic, but didn’t have any symptoms at all any more.
She stated that Evan had been diagnosed as autistic in the past, but that his current neurologist says that he never had autism. She reconciles this discrepancy as proof that Evan has been cured by her interventions.
Joe
Kristina Chew, PhD
Jun 7, 2008 at 9:06 pm
I had to read that twice, Club166, to try to add all that up—–not that it exactly adds up.
Club 166
Jun 7, 2008 at 9:06 pm
Oh, and much worse than her talk of recovery was her repeated reference to children being “stolen” from their parents, and the whole “empty shell” thing.
I don’t care as much what she wants to believe about her own son, as long as she isn’t “poisoning the well” of public opinion about all autistics.
Joe
This Week’s Top Posts
Jun 7, 2008 at 9:12 pm
[…] Recovered or Not?In article after article about the “Green Our Vaccines” rally, it is said that that her son is “autistic” and “has autism”—contrary to what was said at the publication of her book last September. Tags: abc, asd, asperger, autism, berkeley, California, celebrities, celebrity blog, children, Genetics, green, Health, jenny mccarthy, jim carrey, mercury, middle school, mtv, New Jersey, Parenting, pdd-nos, rally, Science, tv, vaccine, washington dcShare This Related StoriesThis Week’s Top PostsLeft Brain/Right Brain ClosesThis Week’s Top PostsThis Week’s Top PostsThis Week’s Top Posts […]
Andrea
Jun 7, 2008 at 10:09 pm
I remember very well when my son was diagnosed. I felt angry and frightened and all kinds of freaked out, but not because of HIM. It was the bleak and very hopeless outlook that the wonderful psychologist gave me in her matter-of-fact, impersonal tone. I would never think of my son as “stolen” or an “empty shell.” Quite the contrary, I often find my son to be more compassionate and empathetic than many of his peers in the neighborhood. Silly Jenny.
Cliff
Jun 7, 2008 at 10:11 pm
“Andrea: There’s a similar clip of “recovered” autistic children posted on YouTube by the Autism Recovery Institute. To me, the kids just seem like high-functioning autistics, but what do I know…”
More than they do, actually.
“I don’t care as much what she wants to believe about her own son, as long as she isn’t “poisoning the well” of public opinion about all autistics.”
Having been there, I actually do care, for his sake. And she certainly is poisoning the well, if the coverage I’ve seen is any indication.
Cliff
toxic
Jun 7, 2008 at 10:19 pm
Maybe you need to read/watch the interviews a few times more.
Evan is recovered, and Evan no longer has an autism diagnosis.
It\’s pretty simple. If he stays on his diet, he is recovered.
codeman38
Jun 7, 2008 at 10:23 pm
Oops, I just realized I got the name of the organization who posted those YouTube videos wrong. It’s the Autism Research Institute, not the Autism Recovery Institute.
My point still stands, though - just because an autistic child becomes higher-functioning does not mean they’re no longer autistic!
Kristina Chew, PhD
Jun 7, 2008 at 10:27 pm
Yes; seems that we’ll be hearing about more students in college who can say “I had an IEP” and still require extra help of a certain sort.
mayfly
Jun 7, 2008 at 10:39 pm
Perhaps one needs to define recovery.
The highest recovery rate was reported by Lovaas 1987 based on children achieving “normal” IQ scores, placement in a regular class without an aide and promotion to the next grade with their peers. These children received extensive intervention.
The study has been highly and broadly criticized. NB, there was also one recovered child from the control group which received no EIB.
Reichow and Wolery in a just published “Online First” article report
and 18% recovery rate in children undergoing Early Intensive Behavioral Intervention using Lovaas’ criteria.
An article on Rubella induced autism (Chess 1973) reported a higher than expected recovery rate. The recovery was based on social engagement, if the child exhibited perserverations that did not preclude him from losing the diagnosis.
Another 1973 study (Norton et al) states 1-2% of those diagnosed with autism “recover to normal” and additional 5-15% have borderline recovery
Sigmund and Ruskin 1999 report recover in 17% of individuals the mean age of recovery was 154 months
Sutera et al 2007 report 39% of PDD and 11% of Autism diagnoses lost between two and four years of age.
An Italian paractitioner, Michelle Zapella wrote a letter saying 13.3% of her patients lose their autism diagnosis in favor of ADHD.
Note I just scanned articles for the recovery rates. I did not examine the claims.
It is apparent that some people do lose their diagnosis. These are people not following the DAN protocol.
I know of one child whose mother recognized a problem when the child was one-year old. She watched how his similarly aged cousins played and interacted, and devised her own version of “floor time.” She became an aide for special needs children in the school district to learn better the techniques they were trying with her son. I don’t know if he lost his diagnosis, but she was nervous because the school district thought he had recovered enough to not need services.
I know another child whose parents did subject him to the entire DAN protocol. He’s now a quite engaged six-year old with friends. His mother thinks he’s on his way to losing the diagnosis. I don’t believe the protocol helped at all. But his parents are of course convinced it was instrumental.
So is it possible that Ms McCarthy’s son recovered from autism, Yes.
If he did, was it for the reasons she believes, highly unlikely
Club 166
Jun 7, 2008 at 10:40 pm
@Cliff,
Just to clarify…
I said I don’t care “as much” about what she wants to believe about her own son, not that I don’t care at all. I do care about him and how he’ll feel about himself in the future. But I feel the far greater damage (to all autistics, including her own son) is the rhetoric that depersonalizes and disparages all autistics. That’s all I was saying.
Joe
Cliff
Jun 8, 2008 at 1:02 am
“Perhaps one needs to define recovery.
The highest recovery rate was reported by Lovaas 1987 based on children achieving “normal” IQ scores, placement in a regular class without an aide and promotion to the next grade with their peers. These children received extensive intervention. ”
I would criticize this definition thoroughly, because the “recovery” doesn’t even reflect the DSM, less than any of the underlying mechanics that makes one autistic. So if that is the definition of the day, ok, but it has nothing to do with autism itself. In fact, if that is the definition, McCarthy’s rhetoric actually makes sense; because the recovery itself isn’t actually related to autism per se, he can still be autistic and be recovered. That’s hardly an adequate use of the language, because the “recovered” is assumed to be “from autism”, not “from being non-verbal”, and not even that one can “recover” from being “non-verbal” (otherwise, you could make statements like, “Yeah, I went to college and recovered from not being intellectual”), but it does work in its own system.
“I said I don’t care ‘as much’ about what she wants to believe about her own son, not that I don’t care at all. I do care about him and how he’ll feel about himself in the future. But I feel the far greater damage (to all autistics, including her own son) is the rhetoric that depersonalizes and disparages all autistics. That’s all I was saying.”
You know… you’re right. I read that too fast and I apologize.
“Maybe you need to read/watch the interviews a few times more.
Evan is recovered, and Evan no longer has an autism diagnosis.
It\’s pretty simple. If he stays on his diet, he is recovered.”
But she also says he is autistic, and if you’re holding them that way it’s an incompatible statement. I’ll hold off on the “he stay on his diet, he is recovered”, because that’s made with no support even from McCarthy herself, slippery in rhetoric as she may be, so there’s no point in me addressing that.
Cliff
Kristina Chew, PhD
Jun 8, 2008 at 1:23 am
Due to Mccarthy’s celebrity status, it’ll be hard to ever know the “true” or “real” story, I suspect. Her son is under a bit more of a spotlight than most children with any diagnosis, whatever it is, and the main thing to be concerned about is to hope that he keeps growing and learning.
Not sure I’ve recovered from “not being intellectual”—-still in a college after all these years, though not matriculating….. it’s a good place to be.
Autism Blog - Autism Recovery | Left Brain/Right Brain
Jun 8, 2008 at 3:09 am
[…] Over on Kristina’s blog, a discussion regarding Jenny McCarthys latest interview turned up this nugget: […]
Cliff
Jun 8, 2008 at 3:24 am
“Not sure I’ve recovered from ‘not being intellectual’—-still in a college after all these years, though not matriculating….. it’s a good place to be.”
Heh, your posts indicate you’ve “recovered” quite well, and then some.
Even then, I suppose it was a clumsy example in some ways, for those who are there and are already quite so and for those who are there and, well, don’t seem to be “recovering” at all.
Indeed, “recover” is such an absurd word in this context. Gaining skills and/or knowledge never otherwise would have been termed under “recovered”, in that way, except in regressive-type autism, and even so only with the terms that one actually lost, but that word carries correctly there(one would say he had recovered his ability to drive if he could and then for stress reasons had forgotten). Note, of course, that I’m not distinguishing regressive autism and non-regressive autism in any beyond its definition, and certainly not in a biological way.
Cliff
Storkdok
Jun 8, 2008 at 7:06 am
When my younger son entered the Siblings Study at LADDERS three years ago, Mass General Hospital, he was first examined by Dr. Margaret Baumann. One of the many questions I asked was, “Is ‘recovery’ possible, or even real?” She said she had never seen an actual child who was no longer autistic. There were a handful of kids she saw over the many years of her practice who may have “lost” the diagnosis, basically they no longer needed an IEP and intensive intervention or an aide in school, but they were still autistic in their way of thinking and perceiving the world. They had learned skills and strategies very well so that they blended in with NTs.
I also asked her about what percentage of children in the Siblings Study they were seeing with “regressive” autism. She said, “None”. She said when they reviewed the videotapes from the parents and watched the children’s development from birth, there were always subtle signs that pointed to autism, but were missed by parents and even clinicians/physicians who were not trained in child development. The atypical development was present from the first year of life, not just after vaccinations in the second year of life. It becomes more obvious in the second year of life when the child doesn’t progress in development when compared to NT children of the same age.
Regan
Jun 8, 2008 at 7:16 am
“Recovery” without specificity is too fluid for me to be really comfortable with since it then runs the risk of being subjective and/or subject to misinterpretation or misapplication.
Mayfly listed a number of things that could probably stand on their own as identification of (reported) outcomes without the additional label of “recovered”.
farmwifetwo
Jun 8, 2008 at 7:47 am
If she can claim her son is “recovered” than so can I about my 8yr old.
They don’t “recover”.. mine may look like a duck, talk like a duck, play like a duck… but he ain’t no “duck”… they finally hit another wall (social skills, abstract thinking etc) and discover… oh… maybe we’re not done yet. Hence, my son’s psychometric testing this summer and social skills programming I keep asking for.
S.
navi
Jun 8, 2008 at 8:15 am
storkdok, while many cases of ‘regressive’ autism aren’t really ‘regressive’ there are true cases of regression.
My son is a case in point. typical development (but then even now he makes excellent eye contact so that ‘early indication’ would never have applied to him). early speech, mama, dada, ‘wowa’ for his sister Lola by about 9 months. when I spoon fed him baby food at six months he’d grab the spoon, direct it to the bowl and put it in his mouth, my primary assistance was making sure he didn’t tip it so it wouldn’t fall off. He played patty cake. He’d laugh and clap if I copied the voice on the self scans at the grocery store (that last thing is one of the first things I noticed he’d lost, because I thought it was so funny). He was a little behind his sister at his age, but considering his sister was well above average, there was nothing to worry about.
Only I don’t believe a vaccine caused my child’s regression. because he didn’t really regress until he started walking. I’m guessing that’s either a coincidence, or because walking provided so much stimulation that he was no longer interested in anything else (once he could run, that is literally all he did). ie, the issues were there, but not pronounced enough to have any effect until he got that stim, but there’s no way I could have known that, no way I could have known that maybe it wasn’t a good idea to let him run around all he wanted. For all I know, if I’d tried to prevent him, his discontent would have interfered with his development, so doing things differently would result in no change. I’d played it by ear with much success with his older sister, and I’d had no reason to do anything different with him.
but he did regress. regression means acquired skills are lost, not that the autism wasn’t there to begin with. This fight against the idea of regressions is counterproductive.
Storkdok
Jun 8, 2008 at 10:00 am
Navi,
Note that I did not say regressive autism doesn’t exist, because I am not an expert in the medical management of autism. I am reporting on what a world renowned autism expert, Dr. Margaret Baumann, told me personally.
I specifically asked her about the loss of skills, and she said that there were signs of autism noted in the videotapes from the parents that had been missed, that they could be identified as autistic even in the first year of life. So her expert opinion at that time was that the child was autistic, the early signs indicating autism were overlooked, not recognized by the parents and pediatricians. So, in her opinion, to say that this “regressive autism” is a separate category of autism is in error. The children are not NT and then become autistic, they always were autistic.
Emily
Jun 8, 2008 at 10:21 am
For the matter of that, our baby showed regression. He had some words at 12 months, and they disappeared, along with a couple of communication gestures (bye-bye, etc.). But I can’t say that what he has is “regressive” per se because he showed other signs waaaaay earlier, but they were subtle, not something anyone would note unless they were really looking, things like retained primitive reflexes, delayed reflexes (reaching out to catch himself in a fall), diplegia, an inability to breastfeed, delayed rolling over, and an odd mechanism of rolling over once it happened.
Thus, if I had been less aware–and I was EXTREMELY aware, reading scientific literature closely–we would have thought that he regressed. But because I already had seen these earlier signs (<12 mos), we knew otherwise.
mayfly
Jun 8, 2008 at 10:25 am
Lovaas claim is not according to DSM IV criteria. He also
stated the recovered children were said by their teachers to be indistinguishable from their NT peers. Critics of the study state
that claim lacks substantiation
mayfly
Jun 8, 2008 at 11:06 am
@Emily why cannot a child show some autistic symptoms almost from birth and as the condition becomes manifest regress in others.
My daughter never had separation anxiety, showed la ck of bonding to us, never babbled, never tried to imitate any action. Lacked any social language, ho Hi’s or by’s never called me Daddy.
On the other hand she loved to be read to, loved pointing out things in books, knew her alphabet and loved to point out letters on sweatshirts or reveal the contents of a scrabble rack, knew the names of nearly everything around the house, was extremely good at generalization, and loved to sing with me. She lost all of this when the autism became manifest.
She was autistic from birth but also lost skills, i.e regressed as the disorder progressed.
Also there were no perseverations earlier in her life. Toe-walking and hand-flapping started long after she was capable of those actions.
I don’t think my child is unusual in this way having many signs of autism nearly from birth, but losing skills as well. After their loss comes the struggle to regain those skills and the joy of even the slightest progress.
My daughter, despite not having an effective method of communicating, has made great progress in her social interactions. According to the DSM-III definition she might be said to be on her way to recovery
Storkdok
Jun 8, 2008 at 11:21 am
@mayfly
My question to you is then do you consider your daughter was autistic then in her first year of life but it was unrecognized? Or did she become autistic once the overt signs were apparent and recognized?
I think most parents of autistic children will be able to point out some skills that are lost and regained at various points in their lives. My son sounds very much like how your daughter presented, but I would not say he has “regressive autism” because the autism was present from early on and just went unrecognized. He was never NT and then became autistic.
I have always understood the term “regressive autism” to mean that the child was NT and then lost skills and became autistic. This is what Dr. Baumann was talking about when she said they were autistic in the first year of life and it was unrecognized.
mayfly
Jun 8, 2008 at 11:22 am
I should add that the skills she learns amy be different from the ones she lost, but allow her to accomplish similar things
Kristina Chew, PhD
Jun 8, 2008 at 12:35 pm
Stop Think Autism has a post about McCarthy’s son as having, perhaps, a diagnosis of epilepsy with developmental delays—-other parents have noted that their children have this and were first diagnosed with autism. And, that some of the educational therapies for autism did not help (not as much as they have for Charlie).
In fact, there was a boy in one of Charlie’s previous school classes who had a PDD diagnosis—-but he had seizures and behavior issues similar to Charlie’s, but the ABA did not “work.” In particular, it was much harder to “motivate” him and sometimes he’d just come out with a completely lucid and socially attuned sentence. It’s usually possible to find some thing to motivate Charlie—-a scooter ride, a piggy back, music, etc..
Sadly, this little boy was sent out of district because of his behavior problems. His academic skills were pretty good and I think medications have helped with the seizures. But he was not too lively when we last saw him.
Joseph
Jun 8, 2008 at 1:00 pm
The highest recovery rate was reported by Lovaas 1987 based on children achieving “normal” IQ scores, placement in a regular class without an aide and promotion to the next grade with their peers.
That’s normally called high functioning autism. Interestingly, the “recovered” Lovaas kids were apparently high functioning at intake, in average.
When a randomized trial was done to try to reproduce Lovaas (1987) with a more sound methodology, only 13% of the kids in the experimental group had best outcome.
Joseph
Jun 8, 2008 at 1:03 pm
Maybe you’ve seen Kev’s post by now. Is Evan recovered? You be the judge. This is what Jenny McCarthy said at the Autism One conference.
Storkdok
Jun 8, 2008 at 1:13 pm
Regarding Lovaas’ trials…I attended a two day conference last month by Michelle Garcia Winner, of Social Thinking fame, and during her talks she had a lot of video she showed of the progress kids made. One young man she showed us and his twin brother happened to be a part of Lovaas’ trials and were kicked out of his study because they didn’t progress fast enough. That’s one way to ensure better outcomes!
H6
Jun 8, 2008 at 1:38 pm
Maybe Jenny McCarthy could help her son and the rest of the autistic community much more if she focused on the role of HHV-6 in seizures and autism: This is from the HHV-6 Foundation’s site:
HHV-6 in Seizures
In a review of 416 seizure patients <3 years of age, 24% had primary HHV-6 infections. (Millichap, 2006) Another study found that 34% of 56 febrile patients with seizures had HHV-6 or 7 infections. (Murakami 2004) A study of HHV-6 & 7 infections in hospital admissions in Britain and Ireland during the first two years of life (Ward et al, 2005) found that 17% of the encephalitis cases were associated with primary infections of HHV-6 and 7, and that the two viruses were equally significant in these cases. One study in Japan found that of those patients with three or more seizures, 80% had evidence of HHV-6 in the spinal fluid compared with only 14% in patients with an isolated seizure (Kondo, 1993).
A recent study in Japan found that HHV-6 could result in convulsions at the time of the rash outbreak following a primary infection with HHV-6. They propose calling this condition HEEC or “human herpesvirus-6 encephalopathy with cluster of convulsions in eruptive stage” (Nagasawa, 2006).
Kristina Chew, PhD
Jun 8, 2008 at 2:03 pm
@H6, Have you tried to contact her?
@Storkdok, We’ve long been suspicious about the claims of “recovery” made by Lovaas—-at the same time, we’ve found ABA to be very helpful for Charlie. I’ve had periods of doubt and sometimes have just felt it too much about data and rigidity, but, over time, it’s been the best teaching method for Charlie.
That said, I really think those claims of recovery (as in Catherine Maurice’s Let Me Hear Your Voice) need to be carefully evaluated, along with a lot of the ugly history of Lovaas, ABA, and behavioral modification.
Our general stance in our household is to be wary of any claim of recovery and to feel that it’s not the point. But learning and making the world a good place for Charlie to be in: Those are constant projects.
H6
Jun 8, 2008 at 2:55 pm
Kristina,
I assume Age of Autism’s Kent Heckenlively is two degrees of separation from Jenny McCarthy. As you may know, his autistic daughter is currently being treated for HHV-6.
Hopefully we will be hearing more about HHV-6 from him in the future and word will spread throughout the autism community.
On April 14th, Mr. Heckenlively (at Age of Autism) wrote this about his autistic daughter’s treatment for HHV-6:
And so it was that I was intrigued when I was given a contact at the HHV-6 Foundation and told that many of their experts believed HHV-6 was involved in autism and seizures. Of even greater interest to me was the assertion that a commonly available medication, ganciclovir, was effective at treating HHV-6 infection with a six month course of treatment. I was told to use the world’s best lab to detect HHV-6, Viracor, if I wanted to get an accurate reading.
After one blood draw went awry and we finally got a sample to Viracor, three weeks after starting on ganciclovir. On Friday I got the result back. It was 100 copies, a weak positive reading.
Curiously, though, she showed no antibodies to HHV-6, suggesting an immune system issue. This puzzled our virologist until I mentioned again to him our belief that autistic children are immune-compromised. He acknowledged my point, but I don’t think he believes me yet.
So, what are the possibilities? After three weeks on the medication maybe it’s done a pretty good job at knocking the virus down? That is a reasonable assumption and to me the most likely one. I’m seeing some clinical improvements, but she often seems to have an up and down cycle over a month, so I’m not breaking out the champagne just yet.
Kristina Chew, PhD
Jun 8, 2008 at 3:33 pm
Have you been in touch with Mr. Heckenlively, too?
Here’s my earlier thoughts on recovery, and grocery shopping.
Cliff
Jun 8, 2008 at 3:35 pm
“but he did regress. regression means acquired skills are lost, not that the autism wasn’t there to begin with. This fight against the idea of regressions is counterproductive.”
That’s fair, as I mentioned, it doesn’t inherently speak either way about autism’s innate qualities. I can see, though, that the regressive autism you note could be similar to what Emily noted, in that the loss of skills isn’t “regressing” into autism, but it still is a regression of skills.
“Lovaas claim is not according to DSM IV criteria. He also stated the recovered children were said by their teachers to be indistinguishable from their NT peers. Critics of the study state
that claim lacks substantiation”
It does, because as stated it relies on a third-person point of view with little notice into the child’s more subtle behavior and is contingent on an individual who may not be paying careful attention. And it is very much in terms of surface structure.
Even there, I doubt you will find ultimately anyone who on the spectrum is “indistinguishable from their peers” if you presume the teacher is paying attention and is competent.
Speaking of Lovass, I actually happen to be his major beneficiary, and while I’m hardly blind to its extremely messy history, I do think that the process can work extremely well, and that while perhaps the rate of “recovery” might have been off and the concept itself extremely dubious, I do think that it well works in teaching “low-functioning” (hey, another dubious concept, in another way) autistics to speak and communicate well enough. I was at UCLA for a summer in 1994, with what would have been considered low-functioning autism (little in the way of social communication, mentally retarded IQ, etc.), and now wouldn’t usually been considered in that light at all (much higher IQ, slightly-off but well-acceptable social communication).
Now, I’m hardly speaking of Lovass as the only possibility; what works does work. And I also, as noted, never would endorse recovery coming from that perspective (where it became rather clear that, in fact, I’m still very much the same in terms of autism itself). But I’m not sure that I’d dismiss it as an educational process necessarily.
Cliff
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Emily
Jun 8, 2008 at 3:42 pm
Mayfly, I’m sorry, but I don’t understand your question. Your description of your daughter is like what I described with my son–early signs AND then also some regression.
Emily
Jun 8, 2008 at 3:44 pm
And for what it’s worth, my oldest son, who is on the spectrum and showed no notable signs of regression as an infant or toddler–although he showed very early and obvious signs of autism–now “regresses” often; he’ll learn a skill, like pumping himself on the swing, and then, like that…it’s gone again.
mayfly
Jun 8, 2008 at 4:10 pm
I consider her autistic from birth and most probably autistic from conception.
Her autism was always there its impact became more noticeable as it caused her to regress developmentally. It now impedes that development. However its influence on that development is very, very slowly waning.
I agree that there are some who claim their children had no autistic symptoms, but I am incredulous. Even if true it does not mean the cause was post partum.
My daughter was born with deep blue-eyes they are now beautifully brown. Perhaps it was the vaccines.
Storkdok
Jun 8, 2008 at 4:19 pm
Kristina,
I have no doubt that a lot of children have benefited from ABA. My son benefited for the first year of his EI with ABA. As his needs changed and he became more social, he benefited from Floortime and SCERTS.
As a former cancer researcher with an MS in Microbiology/Tumor Immunology, I find manipulating the outcome of a study abhorent. I know how to do research, set up a study. I do not like such intellectual dishonesty as to remove patients from studies because they didn’t progress fast enough. That was my point.
I would have still considered Lovaas’ studies to have good outcomes with an improvement in the kids lives, not outright recovery. He didn’t need to manipulate the study.
As to recovery, what is wrong with saying I am helping my child to reach his full potential, instead of saying I am trying to recover him? I am doing the same thing for one son as for my other, helping them reach their potential. One son needs more help in reaching his than the other.
“Recovery” to me means he would no longer be autistic. That is not possible. I would think it would be more frustrating in the future to have him be told he was “recovered” and still have challenges, however subtle rather than to still consider himself autistic with an understanding of his particular areas of difference, which are not bad, just different.
Sorry for the run on sentence! My guy is telling me to get off the computer so he can play The Transporters!
Kristina Chew, PhD
Jun 8, 2008 at 4:51 pm
@Storkdok, you wrote “As to recovery, what is wrong with saying I am helping my child to reach his full potential, instead of saying I am trying to recover him?”—-
nothing wrong and it’s what I say……
mayfly
Jun 8, 2008 at 5:10 pm
@Emily. I understand your confusion. I misread your post.
Storkdok
Jun 8, 2008 at 5:14 pm
Kristina, Great minds think alike! ;0)
mayfly
Jun 8, 2008 at 6:25 pm
I did some checking developmental regression is thought to occur in 20-49% of autistics. Children who have regressed have poorer developmental outcomes than those who did not.
Storkdok
Jun 8, 2008 at 6:50 pm
Mayfly, that is interesting. Where are those stats? It’s interesting because I have always been told by the siblings study researchers at LADDERS that it is better to have had loss of some skills, that those children have better prognoses. But that was from personal communication, not from anything published, and I have been wondering about what has been published on this. I would like to read it!
I need to pull out the three paper published in the siblings study. I haven’t read them in a while and I can’t remember the stats exactly. I haven’t heard Rebecca Landa speak in a couple of years on it.
I am most interested in the definition of the regression and whether the study looked at videos of the children from birth for any early signs of atypical development.
mayfly
Jun 8, 2008 at 10:21 pm
@Storkdok
Regression Versus No Regression in the Autistic Disorder: Developmental Trajectories
P. Bernabei, A. Cerquiglini, F. Cortesi and C. D’Ardia
Journal of Autism and Developmental Disorders
Volume 37, Number 3 / March, 2007
Abstract Developmental regression is a complex phenomenon which occurs in 20–49% of the autistic population. Aim of the study was to assess possible differences in the development of regressed and non-regressed autistic preschoolers. We longitudinally studied 40 autistic children (18 regressed, 22 non-regressed) aged 2–6 years. The following developmental areas were considered fundamental in the first years of life, and were assessed at ages 2, 3, 4, 5, and 6: receptive and expressive language, communicative and request modalities, play activities, and mental age. Children who regressed showed lower mean performances than those who did not regress and, in the time intervals considered, non-regressed children improved their ratings in the above mentioned variables significantly more than regressed children.
Kristina Chew, PhD
Jun 9, 2008 at 12:13 am
Many great minds here!
My son never had much of a regression as a toddler—-all of his development was (and still is) a very slow process. Discrete trial and ABA have been helpful for him because he needs to learn best, and to feel most secure, when things are presented to him slowly and he’s not pushed.
Charlie was nearing 16 months when he walked and now he can walk for miles if he has to—–sometimes I think his pattern is to take his time and then really get into the proverbial grove.
Interesting, mayfly—-up to 6, Charlie’s development was, again, slow but very steady.
Bonnie Sayers
Jun 9, 2008 at 12:46 am
My now 13 year old son Nick did not walk until 15 months and my almost 12 year old nonverbal son Matt started walking at 9 months. He was head banging at 18 months while in his crib.
Andrea
Jun 9, 2008 at 6:20 am
My in-laws believe that Gus regressed and I supposed verbally he may have, although I look at it more as he ceased to progress rather than that he regressed. But there were always signs, from day one. The kid could here a pin drop on a plush carpet as a newborn. THe social development may have seemed like it regressed because we noticed him isolating himself at around 18 months (when he went onto a toddler class at daycare) but I think that was because up to that point, no one really expected him to engage with other children. He never stopped engaging with the family though.
Re: ABA, I was dead set against it at first because I’d heard horror stories from acquaintances. But we had a social worker/parent trainer through EI who recommended a particular school that used ABA and we tried it at home where I could watch what the teacher did. To this day, I think she was one of the most effective people to ever come into Gus’s life. She helped me get him out of his nightmare school and into the school she worked for where he had an amazing two years. So I’d have to say that it worked for him. Unfortunately, because he’s so high functioning now, it seems to be out of the question. His current program uses the TEAACH method, which is okay for him, but it’s more of a struggle.
Amanda
Jun 9, 2008 at 2:15 pm
6 years old is hardly a good age to claim to know the “outcome” of any autistic person’s life. Using 6-year-olds as a gauge of autistic people’s abilities over time is ridiculous.
Beth in Vegas
Jun 10, 2008 at 9:04 pm
Why do you people care? She has her son back THANK GOD> He talks laughs hugs her, kisses her. HOw many other mothers would love to see that in their child they thought they had lost?
Jenny uses an analogy of Autism being akin to being hit by a truck. He is better, he is recovering, BECAUSE he still suffers from side effects from the posions in the vaccines.
He isn’t “cured”, he’s recovered.. get something better to pick apart.. I won’t be back here.. No wonder nothing gets accomplished for the Autism Cause, you people are too busy fighting between yourselves.. Good grief.
Emily
Jun 10, 2008 at 9:43 pm
I can’t speak for anyone else, but I find her claims relevant because (1) if it were true that the two primary therapies she applied actually “cured” her son, that would be wholly relevant to many people, but (2) if he’s not “cured,” then her claims are relevant in a completely different and quite negative sense. And then I care because this crap about “poisons in vaccines” and linking vaccines to autism reflects so much of what drives me up the wall about the level of understanding of science in this country.
But that’s just my personal interest. As for “you people” being “too busy” fighting…that’s usually how things get done. A lot of fighting while priorities get sussed out, then…to work…although work is also being done amidst the fighting amongst “those people.”
I’m sure that all who read and post here will miss terribly your absence and your useful contributions.
Regan
Jun 10, 2008 at 10:29 pm
Of course everyone is glad when a child is doing well and is happy.
Eleanor was diagnosed with severe autism. Probably, she would not qualify as HFA (a term I do not like, as I do not like any of the qualifying terms because of how they are used in public discourse.)
If laughing, kissing, hugging, saying “I love you”, and smiling (I’ll throw that one in for free) qualify as “recovered”, then she’s “recovered”. She talks a little and it is difficult, but her expression and eyes speak volumes. She still has autism.
The specific definitions and diagnoses do matter if one is holding forth as an authority, making claims, promoting specific therapies and asking for changes in public health policy. I’ve been around long enough to have heard many things speculated as a “cause” of autism or a “cure”. At this point, a celebrity or talk show host’s imprimateur is not quite enough.
S.L.
Jun 11, 2008 at 12:20 am
Kristina, thanks for the link! I really would not be surprised, after gathering the information I posted, that Jenny’s son has something other than autism (and NOT “vaccine injury,” in case anyone is wondering!!). People have called me a few choice names for those posts–but I did it if for nothing else but to spark conversation.
I have known parents whose children “lose” their autism label. Typically it will move from “autism” to “PDD-NOS” or “asperger’s” or even “ADHD” or “bipolar.” None of these parents attributed the shift in label to a “recovery.” It was simply that as the child got older, their features changed, and therefore the child (or then teen) fit into another diagnosis. This does not seem to be what Jenny is talking about however–she claims there is nothing going on with Evan other than seizures (and, some very serious seizures at that), and in one interview brief mention of “auditory issues.”
There is no solid definition of “recovery.” Is a child who at age 2 received an autism diagnosis who then is diagnosed instead with bipolar or PDD-NOS at age 7, are they recovered? If a nonverbal child becomes verbal–is that recovery? Recovery is in the eye of the beholder. And, I would say that what some dramatically tout as “recovery,” many of us here would simply call “progress” or “change.”
Recovered, Diagnosed, Undiagnosed…..
Jun 11, 2008 at 1:03 pm
[…] On Sunday I posted about whether or not Jenny Mccarthy’s son is recovered or not. […]
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