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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.
1436 days ago
[...] On Sunday I posted about whether or not Jenny Mccarthy’s son is recovered or not. [...]
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.”
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.
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.
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.
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.
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.
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.
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.
@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.
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.
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.
Kristina, Great minds think alike! ;0)
@Emily. I understand your confusion. I misread your post.
@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……
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!
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.
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, 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.
“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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