Autism Blog - Jenny McCarthy’s son was never autistic?

20 May 2009

Author: Kev
Comments: 71

Jenny McCarthy’s son was never autistic?

A provocative piece in the National Post suggests that very thing.

It is not even certain that her child ever had autism; neurologists have pointed out that her description of the symptoms, and recovery, are more consistent with a rare disorder, Landau-Kleffner Syndrome. Ms. McCarthy may thus be trumpeting a “cure” for a disease of which she has no parental experience.

More than a little interested I tracked down this Letter to Neurology Today.

In After Vaccine-Autism Case Settlement, MDs Urged to Continue Recommending Vaccines (June 5), Dawn Fallik correctly cites Jenny McCarthy as a celebrity fanning the flames of the vaccine-autism link. McCarthy also makes parents think that autism can be cured with unproven treatments – as she claims is the case with her son – documented in her much publicized book, Louder than Words: A Mother’s Journey in Healing Autism (Dutton 2007).

Unfortunately, what the public does not realize as well as perhaps McCarthy is that her son was most likely misdiagnosed with autism in the first place. His disorder began with seizures and, subsequently, with the seizures treated, he improved. This would be more consistent with Landau-Kleffner syndrome, which often is misdiagnosed as autism.

Daniel B. Rubin, MD, PhD

OK, so next stop Landau-Kleffner syndrome.

It is characterized by the sudden or gradual development of aphasia (the inability to understand or express language) and an abnormal electroencephalogram (EEG). LKS affects the parts of the brain that control comprehension and speech. The disorder usually occurs in children between the ages of 5 and 7 years. Typically, children with LKS develop normally but then lose their language skills. While many of the affected individuals have clinical seizures, some only have electrographic seizures, including electrographic status epilepticus of sleep (ESES).

.....

The syndrome can be difficult to diagnose and may be misdiagnosed as autism, pervasive developmental disorder, hearing impairment, learning disability, auditory/verbal processing disorder, attention deficit disorder, mental retardation, childhood schizophrenia, or emotional/behavioral problems.

And is Rubin right? Did Jenny McCarthy’s son Evan’s illness begin with epilepsy?

“I found Evan seizing in his crib,” she told ABC’s Deborah Roberts. “He was foaming at the mouth and his eyes rolled back.”

McCarthy rushed 2-year-old Evan to the hospital. After a few days of multiple seizures, doctors concluded that Evan had epilepsy, but McCarthy was not convinced. Her maternal instinct told her that something was still wrong.

Angry and skeptical of the medical advice she had been given, McCarthy went to a second neurologist who gave her an earth-shattering new diagnosis: Her son has autism.

So yeah he is. Evan’s first presentation was epilepsy.

Not exactly enough to give anything approaching a definite answer but still, interesting. I wonder who diagnosed Evan.

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Comments

71 Responses to “Jenny McCarthy’s son was never autistic?”

The New Republic
May 20th, 2009
13:00:40

Neil Young claimed both his younger sons had Landau-Kleffner Syndrome… It appears now they did not and are both as autistic, as is the just-so-totally-in-the-closet-autistic Young.
rajensen088
May 20th, 2009
13:53:34

If early onset epilepsy is a disqualifier for a PDD diagnosis then the following conditions should be removed from the PDD syndromes since they are all associated with early onset epilepsy:

Cerebral Palsy:
http://www.ncbi.nlm.nih.gov/pubmed/19335564?

Tuberous Sclerosis:
http://www.ncbi.nlm.nih.gov/pubmed/19369101?

Infantile Spasms:
http://www.ncbi.nlm.nih.gov/pubmed/16611748?

Abnormal EEG prevelance:
http://www.ncbi.nlm.nih.gov/pubmed/16611748?

Fragile X:
http://www.ncbi.nlm.nih.gov/pubmed/18570292?

Landau Kleffner Syndrome:
http://www.ncbi.nlm.nih.gov/pubmed/18602026?

Pradi-Williams and Angelman Syndrome:
http://www.ncbi.nlm.nih.gov/pubmed/19396834?

Rhett Syndrome:
http://www.ncbi.nlm.nih.gov/pubmed/19362436?

Neuroteratogenic drug exposure:
http://www.ncbi.nlm.nih.gov/pubmed/19281802?
autismnostrum
May 20th, 2009
15:16:09

Yeah, I’ve heard this theory before. And it’s possible. It’s also possible also that he’s always been autistic and she’s just still in denial about it. She doesn’t bring Evan with her to interviews. She shows video clips of him, but it’s never enough for me to really see him talking, you know? It’s also possible that he’s improved to the point that he no longer qualifies for services and can “pass” as NT.

She did, after all, give him intensive ABA and speech therapy. She credits all the weird diet woo, but she did exactly what experts recommend she do in terms of early intervention.
Joseph
May 20th, 2009
16:22:01

The first set of doctors apparently didn’t notice Evan was autistic. A generation back that might been commonplace. But in this day and age? He probably never was too obviously autistic.
kathomar
May 20th, 2009
16:34:12

I find it all very worrisome-for different reasons. Maybe he does and maybe he doesn’t have autism. The fact is that she has both in her books and public speaking denigrated people on the spectrum. She publicly states that the measles coming back may be the thing to make her “green vaccine” cause be noticed. She has the arrogance to blog about her own poop-AND PEOPLE READ IT She has caused a whole lot of damage-regardless of what her son has. The really upsetting thing to me-as a parent is her son. whatever his diagnosis-being scrutinized so publicly is going to have a lasting effect. If he is indeed on the spectrum-he will be on the spectrum as an adult..what will he think of himself. Jenny McCarthy really needs to just go away…
lizditz
May 20th, 2009
16:49:47

@ The New Republic—I know the Young slightly family socially (daughters were in an after-school program together). The younger son has profound cerebral palsy, uses a wheelchair, and cannot articulate speech. How that translates into “autism” I do not know. Mr. Young also had or has epilepsy.

As to Evan’s actual diagnosis—to my mind concentrating on McJenny’s anti-science spew is more important.
Chris
May 20th, 2009
17:13:20

McCarthy rushed 2-year-old Evan to the hospital.

Unless she was already delaying his vaccine, Evan would have had his MMR at least six months before (it is given sometime between 13 and 15 months). I don’t see how the vaccine would be responsible for that set of seizures.

Landau Kleffner Syndrome was suspected for my son due to his history of seizures as an infant, even though he had never developed any speech (you can’t lose speech you never had!). It was ruled after a sleep-EEG (which was not easy to get, and involved at least two tries!). There are seizures that occur while the child sleeps that cannot be noticed that literally steal language from the brain.

Fortunately my son’s seizures resolved and he is not on any medication. The severe speech and learning disabilities still exist.
Chris
May 20th, 2009
17:21:20

Ooops, not proof reading… LKS was ruled out after his sleep EEG (which was one of many non-invasive tests done by the neurologist’s office).
Kev
May 20th, 2009
18:08:44

Just out of curiosity Chris (and if you don’t mind sharing) what was your son eventually diagnosed with?
Sullivan
May 20th, 2009
19:02:21

Chris,

You make a point I have wondered about a lot—when did Evan get his last vaccines?

The schedule would put it at 13-15 months.

While the story above says “age 2”, Jenny McCarthy says her son was 2 1/2 when the symptoms begain—from Oprah.Com

Jenny says the first of those “big hints” came on a typical morning when Evan was 2 1/2 years old. When Evan, who usually got up at 7 a.m., wasn’t stirring by 7:45 a.m. Jenny knew something was wrong. She ran to the nursery. “I open the door and run to his crib and I find him in his crib, convulsing, struggling to breathe, his eyeballs rolled to the back of his head,” she says. “I picked him up and I started screaming at the top of my lungs … the paramedics came, and it took about 20 minutes for the seizure to stop.”

So, if her son was 30 months old and likely got his last vaccines at 15 months…how is this a vaccine injury?

Or, was Jenny McCarthy following an “alternative” schedule? I doubt it. But, if that were the case, this wouldn’t be a good story to sell “alternative” schedules, would it?
Prometheus
May 20th, 2009
20:25:16

Jenny McCarthy’s story about what her son has, when it started and how it presented has changed more times than I care to count. I doubt that even Jenny McCarthy herself can remember what the truth is.

I strongly suspect that if Jenny thought that she could get more media attention by saying that her son’s problems were due to silicone breast implants, she’d probably find a way to “morph” his story to support that. However, I have no proof of that.

We all need to step back for a moment and remember that Jenny McCarthy and her paramour are actors. Granted, Jenny isn’t much of an actor, but that’s what she does/did for a living.

Actors often have a hard time separating themselves from their role, especially when they play the role a great deal, as Jenny does. She and Jim Carrey may not be able to clearly distinguish what really happened to Evan from what they have been saying as part of their latest roles as parent and sort-of-step-parent to “Evan, the Vaccine-Injured Autistic Boy”.

In reality, however, it matter not to us what Evan’s diagnosis is or what actually happened to him. It is sufficient that we know that Jenny McCarthy has given so many versions of the “what happened to Evan” story that none of them should be taken as the literal truth. This not only calls into question her already questionable status as Oprah’s Expert on Autism, but also her status as Autism Warrior Mommy.

After all, she’s the one who claims that only parents of autistic children have “special wisdom” about autism and what causes it. Since she can’t seem to decide whether her child has/had/will have autism, her “mommy wisdom” is equally suspect.

Prometheus
autismnostrum
May 20th, 2009
20:26:15

Later in the Oprah story she says that there were clues she’d missed earlier and people had asked her if her child had a “brain disorder.” But she claims she always suspected the soul-stealing MMR, so it makes sense that she’d go back and retroactively edit her own history to make that one fit:

“Right before his MMR shot, I said to the doctor, ‘I have a very bad feeling about this shot. This is the autism shot, isn’t it?’ And he said, ‘No, that is ridiculous. It is a mother’s desperate attempt to blame something,’ and he swore at me, and then the nurse gave [Evan] the shot,” she says. “And I remember going, ‘Oh, God, I hope he’s right.’ And soon thereafter—boom—the soul’s gone from his eyes.”

Ok, why on Earth does she keep going to a doctor that swears at her? I don’t believe her. And, yeah, so offensive that the “soul’s gone from his eyes.” Maybe that’s why he swore at her. The statement makes me want to swear at her.
Sullivan
May 20th, 2009
20:37:10

“And I remember going, ‘Oh, God, I hope he’s right.’ And soon thereafter—boom—the soul’s gone from his eyes.”

Yeah…the soul was gone from his eyes…then she waited another year until after the seizures before she sought medical attention?!?
Kev
May 20th, 2009
21:19:43

You’re right RAJ, I don;t think its definitive either but its interesting. Maybe worth following up.
kathomar
May 20th, 2009
21:31:04

I’m not defending Jenny-no yuk no-but…I have to say that both my boys were not given a firm diagnosis until they were 3 1/2 and 4 respectively..They are 10 and 8 now. So it does happen-we were consistently told to wait and see..
Chris
May 20th, 2009
23:41:42

Kev:

Just out of curiosity Chris (and if you don’t mind sharing) what was your son eventually diagnosed with?

That usually changed a bit, but the main bit was static encelopathy which may or may not be related to a history of seizures. Which is neuro-speak for “something is wrong, we don’t know what, but it is not changing”. Which is very unlike the labels that have put on his medical/educational charts, which were constantly changing: childhood aphasia, apraxia, dysphasia, dysarthria, specific language impairment (SLI), and the ever popular “Other Health Impaired”.

He was initially diagnosed before 1992.
autismnostrum
May 21st, 2009
02:31:25

She’s projecting backward to try and figure out the point at which things went wrong. I think that’s very normal. And that’s why we have science to tell us if it’s a connection or just a coincidence.

And if she was already predisposed to believing the MMR caused autism, of course she’d look back on that alleged conversation and point her finger there. I don’t believe her about the swearing. It’s so over the top and conveniently portrays her as the hero mom that was fooled into going against her instincts by the eeevil AAP and big pharma.
thoughtsofanautistic
May 21st, 2009
12:34:18

Found out about the Landau-Kleffner theory not too long ago… while there’s nothing 100 percent definitive, I certainly believe it.
Amber Brown
May 21st, 2009
21:23:25

If you believe a doctor would never verbally assault a patient’s parent about autism I have a few I’d love to introduce you to.
Kev
May 21st, 2009
21:26:27

Amber, I have trouble believing that any parent as loud mouthed and forthright as Jenny McCarthy would ever just sit back and allow a doctor to swear at her without any sort of comeback. Also, according to her, she wasn’t an autism parent then.
Sullivan
May 21st, 2009
23:04:03

rajensen088,

You do realize that no one said that epilepsy is a disqualifier for a PDD diagnosis, right? There is a BIG difference between Landau-Kleffner and epilepsy. If you followed the link you would know that.

The Wikipedia article linked states:

Landau–Kleffner syndrome (LKS), also called infantile acquired aphasia, acquired epileptic aphasia[1] or aphasia with convulsive disorder, is a rare, childhood neurological syndrome.

Epilepsy doesn’t usually include aphasia.

It is the aphasia that leads to the diagnosis—whether correct or not—of autism. Since other articles online, including this one at NIH discuss that Landau Kleffner Syndrome is often misdiagnosed as Autism, it is fair to posit that should Evan McCarthy have L-K syndrome, his autism diagnosis was incorrect.
Sullivan
May 21st, 2009
23:31:38

Now for the big picture—
It doesn’t really matter if a child with Landau-Kleffner syndrome is correctly

From the NIH webpage:

Landau-Kleffner syndrome (LKS) is a rare, childhood neurological disorder characterized by the sudden or gradual development of aphasia (the inability to understand or express language) and an abnormal electro-encephalogram (EEG). LKS affects the parts of the brain that control comprehension and speech. The disorder usually occurs in children between the ages of 5 and 7 years. Typically, children with LKS develop normally but then lose their language skills for no apparent reason. While many of the affected individuals have seizures, some do not. The disorder is difficult to diagnose and may be misdiagnosed as autism, pervasive developmental disorder, hearing impairment, learning disability, auditory/verbal processing disorder, attention deficit disorder, mental retardation, childhood schizophrenia, or emotional/behavioral problems.

It is worth noting that Evan McCarthy’s first seizure was during sleep—which is classic of L-K syndrome

Seizures are usually few and often occur during sleep.

Given the above, and Jenny McCarthy’s descriptions of events (including Evan’s cloudy thinking) the idea that Evan could have L-K syndrome is reasonable.

But, and this should be stressed, it is still speculation at best.

The real questions are
a) did Evan McCarthy suffer a vaccine injury
and
b) did Jenny McCarthy’s DAN! approach “recover” him?

As to (a), since it appears that the onset of symptoms happened 15 months after Evan’s last vaccinations, I would have my doubts about vaccine injury.

As to (b), some kids recover from L-K syndrome. Again from the NIH webpage:

The prognosis for children with LKS varies. Some affected children may have a permanent severe language disorder, while others may regain much of their language abilities (although it may take months or years). In some cases, remission and relapse may occur. The prognosis is improved when the onset of the disorder is after age 6 and when speech therapy is started early. Seizures generally disappear by adulthood.

A big question would be—was it the antifungals and other DAN! therapies; was it the anti-epileptic drugs stopping the seizures leading to improvements; or was it just a normal development out of L-K syndrome (should that have been his condition) that “recovered” Evan?

I doubt we will ever get clear answers.
Kev
May 21st, 2009
23:38:33

No we won’t. McCarthy has contradicted herself several times over Evan’s ‘recovery’. Just lately she said he was totally 100% recovered then tweeted live from a HBOT chamber. She also then said recovery didn’t mean cure.

Its all one big shifting veil of bullshit.
dr treg
May 22nd, 2009
01:00:27

The parents of Evan have been condemned by many as being unique in changing the clinical history giving the reasons of profit/power motives and because they are in the acting profession and out of contact with reality.
However it seems that parents of possible LKS do often change their perception of the problem
“The present author found that 40% of patients referred for workup of language deterioration actually had other problems. In 2, a history of language deterioration was not given during the first visit to the neurology clinic; however, over time, the parents’ perception of the problem changed. This change may have been due to the desire to give the child the benefit of doubt in the evaluation to differentiate AEA (LKS) from autism. This parental perception springs from the notion that AEA (LKS)can be treated but that autism or pervasive developmental disorder (PDD) cannot. However, this belief does not reflect the reality of the difficulties in treating AEA.”
Source Landau-Kleffer syndrome e-medicine
Also of interest is that the mutism or aphasia was not always related to having epilepsy in families with PKS pedigrees as some children with mutism or aphasia had no epilepsy.
One does wonder if PKS is just a later-onset variant of autism with mutism and epilepsy predominating. 78% of LKS patients do have symptoms relating to fear, self-pity and resentment.
passionlessDrone
May 22nd, 2009
13:55:52

Hi Sullivan –
Landau-Kleffner syndrome (LKS) is a rare, childhood neurological disorder characterized by the sudden or gradual development of aphasia (the inability to understand or express language) and an abnormal electro-encephalogram (EEG).

Now that is interesting. Did you know that we have quite a few studies showing high levels of abnormal sleep EEGs in children with autism?

Nonlinear analysis of the sleep EEG in children with pervasive developmental disorder

Not EEG abnormalities but epilepsy is associated with autistic regression and mental functioning in childhood autism.

Sleep electroencephalograms in young children with autism with and without regression

Frequency of epileptiform EEG abnormalities in a sequential screening of autistic patients with no known clinical epilepsy from 1996 to 2005

There is no current consensus on whether treatment of EEG abnormalities may influence development. This retrospective review of 24-hour ambulatory digital EEG data collected from 889 ASD patients presenting between 1996 and 2005 (with no known genetic conditions, brain malformations, prior medications, or clinical seizures) shows that 540 of 889 (60.7%) subjects had abnormal EEG epileptiform activity in sleep with no difference based on clinical regression.

The relationship to losing skills doesn’t seem to be there, but there does seem to be a much higher incidence of abnormal EEGs, and full blown epilepsy in the autism population.

@ Dr. Treg –
One does wonder if PKS is just a later-onset variant of autism with mutism and epilepsy predominating.

Indeed.

– pD
Sullivan
May 22nd, 2009
14:48:12

pD—
The question is what specifically has to be abnormal on an EEG to qualify for LKS. Obviously not all abnormal EEG’s indicate LKS.

Otherwise, we could “diagnose” Evan McCarthy right now, as I believe he had abnormal EEG’s.
Joseph
May 22nd, 2009
15:41:11

LKS could easily be a ‘type’ of autism. There’s nothing in the diagnostic criteria that precludes it (except perhaps age of onset, which doesn’t matter in this case.)

That said, you might recall Evan had a major seizure on May, 2007 (this post). Apparently he couldn’t walk or talk a month after the seizure. It seems likely that his developmental delays are secondary to a seizure disorder, regardless of the ‘proper diagnosis.’
passionlessDrone
May 22nd, 2009
16:13:00

Hi Sullivan –
Hm.

I’m of the mind that there is still a world of information to be gleaned about a lot of these conditions, and there is likely to be plenty of overlap. There is also no reason to believe a child might not have LKS as well as behaviorial manifestations of autism. So while your statement is technically correct, I guess I’m just much more interested in looking for patterns and learning more, as opposed to speculating on the validity of Evan’s diagnosis.

Anyways, for getting started, Chez’s book on the treating autism medically has some text regarding the similarities, and differences in eliptiform activities between LKS and autism.

Another paper that does a bit into detail on the EEG findings in LKS gets deep pretty quickly, but does indicate there is wide variability in findings. The Landau-Kleffner Syndrome This one is older, but free full version; maybe there is more detailed information available that I didn’t have time to find.

– pD
Kev
May 22nd, 2009
17:02:58

Dr Treg, I think McCarthy has been questioned more about the ever-shifting cure/recovery date/circumstances more than what happened to start it off.

LKS could easily be a variant of autism I guess. But I think (Im open to correction) that LKS is primarily defined by the fact its a seizure that is the first symptom – as in Evan’s case. Whereas for autism its a wide range of things but not epilepsy.
me.yahoo.com/a/xM9hDy8o1uR4_vrVM0e0EmIzGPMInrg5Ag--
May 23rd, 2009
08:24:35

.
.

.
My daughter was diagnosed with a variant of LKS (acquired epileptiform aphasia) when she was 4, first by Roberto Tuchman at Miami Childrens and then by Michael Chez. Both agreed that it was not classic LKS because she had too many autistic like characteristics. True LKS occurs much later than the toddler years – more around age 5. It is a loss of language coupled with behaviors. Those behaviors are a result of the loss of language.

I doubt Evan had/has classic LKS. Those seizures occur in the temporal lobe in the third stage of sleep. A child with LKS would not have a seizure leading to cardiac arrest – such as Evan had in another sensationalized version of McCarthy’s story.
Kev
May 23rd, 2009
11:28:16

Interesting statements from Chez. Seems to back up the idea that LKS is a variant of autism.

As regards age at diagnosis, it seems (according to the UK LKS society) that the advanced age is due to difficulty of diagnosis:

As the condition is not well known and has complex effects on language and often also on behaviour, it can take some time before the whole picture is recognised both by parents and professionals and so it can take some time before LKS is diagnosed.

Its not that it starts late, more that it is diagnosed late.
me.yahoo.com/a/xM9hDy8o1uR4_vrVM0e0EmIzGPMInrg5Ag--
May 23rd, 2009
16:16:16

I do not think Chez considers LKS a variant of autism. Instead, I think his position is that there are variants of LKS epileptiform activity that are present in autism. Treating the epileptiform aphasia may help speech and language progress in autism, but it will not correct the other behavioral/social criteria.

Chez stresses the necessity of an EEG early in the autism diagnosis so these patterns can be caught and treated. In the past it seemed the EEG came about only after ABA and other interventions were not successful.
Why it doesn’t matter that Jenny McCarthy’s son may not be autistic « A Fistful of Science
May 27th, 2009
23:42:31

[...] that Jenny McCarthy’s son Evan was possibly misdiagnosed. See this post on the autism blog Left Brain/Right Brain about whether Evan might actually have Landau-Kleffner syndrome (LKS). I was going to try to get [...]
Guess what? Still ranting… « Never Judge A Book By Its Cover
July 23rd, 2009
20:33:33

[...] yeah hee cah1470: OMG I didn’t realize jenny mccarthy’s son may not even have autism http://leftbrainrightbrain.co.uk/?p=2360 seikikuurin: i didn’t either cah1470: explains why he was “healed” from her [...]
David N. Brown
July 24th, 2009
03:13:26

Jenny gave two accounts of her son’s history, one to CNN and one on Oprah. They give very different timeframes for her son’s problems: the former indicates his issues started at 24 months, the latter closer to twelve months (after MMR). I think Evan could have been showing autistic symptoms all his life, but she unconsciously ignored or denied them.

I have an article on this up on my own website: evilpossum.weebly.com
Sullivan
July 24th, 2009
07:10:07

David N. Brown,

good site. I too have noticed a few instances where Ms. McCarthy’s stories haven’t been consistent.
David N. Brown
July 24th, 2009
08:43:50

Thanks for the positive comment. It’s also good to know I’m not the only one who noticed. The Oprah and CNN stories are actually the only works of hers I’ve read. The remarkable thing is, they’re pretty much written at the same time. Wonder how many other conflicting stories there are. I have thought a little more about the question of Evan’s diagnosis, and I think it’s not particularly constructive to argue by trying to exclude people from the autism diagnosis. My attittude is, autism is a description, not a thing.
jjbeck
October 3rd, 2009
18:10:27

Two of the most well written articles on ESES explains the electrical status (the epilepsy syndrome that causes LKS)
can also lead to regressive autism.

Please research more & post more accurately.
Kev
October 3rd, 2009
18:49:08

Can you supply links to these well written articles please jjbeck….?
jb123
October 6th, 2009
02:10:34

“There are seizures that occur while the child sleeps that cannot be noticed that literally steal language from the brain.”

When language regression occurs and a doc is referring to LKS and/or regressive autism, it is usually not actual seizures they are referring to contributing to regression of language, but epileptiform activity(abnormal activity but not actual seizure) . Continuous or almost continuous is referred to as ESES (electrical status)

“It is worth noting that Evan McCarthy’s first seizure was during sleep—which is classic of L-K syndrome”

It is common for anyone with epilepsy to have seizures during sleep. It is not just classic of LKS. Many kids with autism also have sleep activated seizures. When referring to LKS and sleep, it is the sleep activated epileptiform activity (which in not actual seizure), ESES that is most associated with LKS and language regression (AEA).

“Instead, I think his position is that there are variants of LKS epileptiform activity that are present in autism.”

Yes, it is correct there are LKS variants. Some of these kids do not fully regress the way typical LKS does.
There are also many kids first DXd w/ LKS then later DXd w/ regressive autism based on symptoms or simply the child later meets the DSM criteria for ASD.
As the above poster mentioned epilepsy does not r/o autism.
Neither does LKS.

“A child with LKS would not have a seizure leading to cardiac arrest –”

This statement is not true. While kids with LKS sometimes do not have obvious seizures, many do sometimes have NCSE (non-convulsive status epilepticus). W/ NCSE, the person can have autonomic sz symptoms which can sometimes (though rarely) lead to serious cardiac issues including death.
I have known of many LKSers to have NCSE.
Travis T
November 28th, 2009
20:15:35

Jenny McCarthy is doing what any other celebrity would do. She’s getting as much fame and fortune as she can. It doesn’t matter if her child is autistic or not. Who cares if it hurts others who are dealing with family members with true autism (low or high functioning). Who cares if she doesn’t know what she’s talking about? Who cares if she lied? Who cares if her son simply had another disorder or medical disorder other than autism? Who cares if what she does hurts autism research? Or services given to families who have children with real autism? Let’s just give her a round of applause for her academy award performance. And let’s give a special standing ovation to the intelligent, critical thinking, classy and caring and honest folks who stand behind her. Meanwhile, let’s take a look at some videos on you tube that show hardcore autism (autism seizures) (autism self injury) I wonder if Jenny M. and others who claim to know something about autism know or have ever considered this side of autism. Surely, they have not. But who cares, right?
Carmen
November 30th, 2009
19:49:41

Is anyone aware that Jenny McCarthy and her publishers of the book, “louder than words: a mother’s journey of healing..” stole lines from a raw manuscript another mother of an autistic child sent into publishing companies before Mccarthy’s book was ever thought of? Bet nobody knows this yet. These scumbags stole the words and experience of another mother who tried to get her book published.
Sullivan
November 30th, 2009
19:56:05

Carmen,

I was unaware of this claim.

Do you have any more details? Feel free to email me at sullivansjourney@gmail.com.
Sullivan
November 30th, 2009
19:59:21

Carmen,

I will add that I know Ms. McCarthy has told two very different versions of at least one story from her books. She talked about her meeting with Barbara Walters on the day of her appearance on “The View”, both in a book and in a TV interview.

Funny thing, in one version, the confrontation happened before the show was filmed, in another version it happened after.

The interview video was pulled from the web very quickly.
David N. Brown
November 30th, 2009
20:52:02

How “celeb” books get written is a subject unto itself. It is safe to assume that Jenny had considerable assistance from “ghost writers”, who may in turn have plaiarized. (Uncredited ghost writing is not conducive to high morale and professional pride!) However, I would take this with a grain of salt: Claims of plagiarism are often made on no foundation beyond what can be considered coincidental.

I will also add a couple thoughts on McCarthy: I am sure she is prone to suggestion and false memory. I think it is also possible she has experienced Capgras syndrome (or something close to it), in which a loss of emotional feeling appears to lead to the delusion that a loved one has been replaced by an impostor. This would fit with her nebulous statement that “the soul was gone from (Evan’s) eyes”.
Sel
January 26th, 2010
18:16:39

I can’t believe you are all arguing about this. What does Jenny McCarthy do anyway? She says she’s had success with her own son with a whole foods diet and lots of love and attention. For pete’s sake, what’s so bad about that? Eliminate wheat and dairy? Everyone should do that. They cause health problems for anyone who consumes them.

BTW, just how extraordinarily unprofessional is it for this person, Daniel Rubin, to try to diagnose a kid he’s never even met? Seems a bit arrogant, misguided and extremely biased on his part.

As far as vaccines, vets are now routinely recommending that pet owners restrict the number of vaccines given to dogs because they can be detrimental to overall health. So, if we’re looking out for our dogs this way, why not our children?

I guess I really don’t understand how people can rag on another mother that way … at the end of the day she’s just like you, wanting the best for her kid.
Sullivan
January 26th, 2010
18:22:57

Sel,

are you yet another hit-and-run commenter who found an old post on this blog? Will you come back to discuss?

Jenny McCarthy is nothing like me. I don’t make public statements falsely linking vaccines to an autism epidemic.

I don’t shout obscenities at polite people in TV talk shows.

I don’t have free vaccine clinics canceled.

I don’t change my story to fit the message in my book.

Shall I go on?
soloartist
February 5th, 2010
01:51:26

I know of someone who has Autism who was put in a very sad situation because of Jenny McCarthy’s books.

I work with disabled people and this person is severely Autistic, non verbal, has behavioral issues, etc. He was in his early 20’s when his mother ran across the whole gluten, casien, dairy free diet thanks to Jenny McCarthy.

For almost two years his mother forced this diet on him along with an enormous amount of supplements, vitamins, and antifungal medications. Many doctors and pharmacists were seriously concerned about the medications he was on. Yet his mother insisted.

During this entire time the ONLY thing that changed was that he became VERY angry. His speech never increased and his Autism never got any better. His mother clung to hope but in the end, the only thing that happend was this guy became very angry and his behaviors increased incredibly. It was so sad. Those of us who worked with him every day felt horrible making him stick to this diet and take all those medications.

I cant tell you that this “Autism Diet” doesnt work. Maybe it does for young children who have just been diagnosed. But this guy was already in his 20’s. He became a different person and his mother was devestated when she finally gave up and took him off it. We found out later that the doctor who put him on his diet was one who worked with the doctor who suggested the Autism Diet to Jenny McCarthy. This doctor also sold these supplements out of her office. It was such a racket. And the food? Dear God!! Its SO expensive and so gross. Eight dollars for a box of 6 small cookies. A fortune was spent for nothing.

Personally, I have always felt that one day it will come out that Jenny McCarthy’s son was mis-diagnosed. And while I hope for his sake he was, I know its going to bring a serious blow to the Autistic community if this does happen.

Autism is a strange thing. The higher functioning Autistic might benefit from something like the diet but severely Autistic..it just doesnt work.

And frankly…I dont see why they should have to change who they are. I work with a lot of different disabilities and I have to say, the Autistic people I work with, they hold a special place in my heart.
The 21st Floor » Blog Archive » Jenny McCarthy’s Battle With Sense
February 12th, 2010
18:27:51

[...] he was going to get better anyway? Maybe it was some kind of placebo effect by proxy? Maybe he was never even autistic in the first place? Maybe she’s just gone mad? The fact is, that when we control for such biases, the effect of this [...]
WALTER ADAMS
March 11th, 2010
03:19:57

HAS ANYONE EVER ASKED EVAN’S FATHER OR THE PATERAL GRANDPARENTS ABOUT THEIR PERCEPTION OF EVAN’S EARLY DEVELOPMENT?
Chris
March 11th, 2010
03:56:05

Not everyone is a publicity hound, and they more than likely do not want to get embroiled in McCarthy’s world. Once upon a long time ago I saw a quote from Evan’s paternal grandmother that sounded like she did not agree with Ms. McCarthy.
Susan
April 7th, 2010
21:54:30

You know at this point, who really cares! All autism is based on is a series of behavior! Everything is being lumped into one category, mental retardation, fragile X, tuberous sclerosis, mitochondrial disorders, food allergies & intolerances, it’s a wonder the term autism still even exists. Seriously, the term is so diluted and covering such a broad range of disorders, it’s not even funny! Maybe Evan is autistic, or maybe not. Alot of the people on the spectrum, including my own son, may or may not be truly autistic. If everyone on the spectrum, were required to have manditory screening for all of the above conditions, people would likely be amazed at how many of these diagnoses of autism would disappear! But because autism is only based on a triad of sypmtoms, who says you can’t have multiple diagnoses!
Estee Klar-Wolfond
April 7th, 2010
22:51:06

Latest: Jim and Jenny broke up.
David N. Brown
April 7th, 2010
22:59:43

As far as I know, that’s just what gossip mags are reporting. It would be best to wait for further confirmation to make an issue of it.
jypsy
April 7th, 2010
23:49:57

It’s fact. Horse’s mouth:
http://twitter.com/JimCarrey/status/11719952360
http://twitter.com/JennyfromMTV/status/11720605622
David N. Brown
April 8th, 2010
00:44:52

Somewhat surreal… It reminds me a little of Satan’s boyfriend Chris on South Park.
Katie
May 25th, 2010
03:51:40

This is just going off what we’ve learned in class about autism (med student), but even though autism is diagnosed later in most kids (around age 4), the signs and symptoms are supposedly there early on. So if you look at pictures of the child or home videos, you can see that something wasn’t right (ie, the kid didn’t look when his/her name was called, no pretend play, things like that). So there’s probably no way he all of a sudden had no soul after the autism shot, and if her son really did have autism it would be clear from the photos.
David N. Brown
May 25th, 2010
18:32:40

“if you look at pictures of the child or home videos, you can see that something wasn’t right…”
I think even Jenny’s accounts show this. In particular, she describes her son “flapping” by age 1, which is considered a major feature of autism (though I’m a little skeptical how useful it is for diagnosing infants).
senta
September 21st, 2010
12:58:08

The important thing is : her son got very ill whatever nametag you put on it. To me epilepsy, autism or Landau are all horrible conditions for which they are generally ‘no cure’. So congratulations to Jenny and for sharing her experience. My child was also autistic low functioning and is now fully recovered thanks through all these biomed treatments and without ABA or other therapies.
I was wondering if he would ever be able to speak again and to develop some intelligence, if he would be an assisted person etc…Well today (after 3 years) you could not tell this child ever had a problem and even find him pretty clever.

Discussions about being a real autistic have absolutely no sense. Autism is defined by : behaviours and cognitive and physical traits but not by medical labs. Doctors say: we don’t know why they have autism, we don’t know what’s going on, but we are certain that your son has autism and will never recover. Therefore the definition of autism is ” a condition that you are not allowed to recover from’. If you do then there was a misdiagnosis…this is absolutely ridiculous.

My friend’s daughter was autistic from birth, Kanner syndrome (the worse diagnosis). Her dd also recovered with biomed (and therapies) going from an IQ of 60 (mental retardation) to 140 (exceptionnally gifted). All other skills came back, stopped mutilation, stims etc…

But it’s true the diet doesn’t work for all of them…just like cancer for example some people recover and some people die…would this be a good reason not to try it and just give up?

Can you deny a child the right to be treated? If they have GI problems, or chronic bacteria and viruses or mercury in their sytem and lack nutriments…do you think it doesn’t have to be treated because ‘it’s part of the condition called autism’.

Doctor’s who still pass on this stupid autism=uncurable myth are a shame to science and their patients.

Senta.
Visitor
September 21st, 2010
15:05:29

Senta: Unfortunately, you are wrong. While Jenny’s McCarthy’s family circumstances and her son’s problems are private to her, and, as you say, what one calls her son’s problems is less important in that context, this isn’t the end of it.

She chose to exploit and enhance her celebrity status with the damaging public claim not only that her son had autism, but that it was caused by a vaccine and, moreover, she cured it with biomedical treatments.

These are public claims, for which she has produced not a shred of evidence, and which all public circumstantial evidence suggests are false.

This is truly shocking conduct. If she is unable to substantiate her allegations, she deserves nothing but the public’s contempt.
Sullivan
September 21st, 2010
17:50:43

Senta,

Whether Ms. McCarthy’s son has Landau-Kleffner syndrome (LKS) is an important question in regards to his recovery. Kids with LKS often make very large gains when their seizures are controlled. That would mean that it was the seizure meds, not the diet, antifungals or whatever else, that helped him make his progress.

Can you deny a child the right to be treated? If they have GI problems, or chronic bacteria and viruses or mercury in their sytem and lack nutriments…do you think it doesn’t have to be treated because ‘it’s part of the condition called autism’.

No, I can’t deny a child the right to be treated. Never said I did. There are, however, a lot of people who either through misunderstanding, ignorance or just plain desire to spread misinformation, who promote the idea that a segment of the autism community would deny treatment for GI problems, infections, mercury and the like.

Now, it is another thing entirely to point out when these “therapies” are based on bad science and needlessly put children at risk. I will speak out when I see that happening. If people wish to put a false label on me for those actions, it is not of my doing.
leslie
October 15th, 2010
00:22:11

Breaking news: Famous “High Functioning” Autistic Woman now claims to be Multiple Personality Disorder

YouTube – 1210donna’s Channel Channel of Donna Williams, international bestselling author, artist, with autism recently diagnosed with Dissociative Identity Disorder

interesting!
Sullivan
October 15th, 2010
00:47:46

Leslie,

Just to be clear, are you trying to say that Donna Williams is not autistic?

Here is what Donna William’s web page has to say:

“Other diagnoses over the years including primary immune deficiencies (lack of white cells, no IgA, low IgG2, D deficiency), gluten, salicylate and phenol intolerance, severe casein allergy, type 2 diabetes, a B12 deficiency and a genetic myalgic condition which results in higher levels of inflammation than most people. I was also diagnosed with atypical epilepsy after an EEG, with visual perceptual processing disorder, mood anxiety and compulsive disorders and in 2010 got an additional diagnosis of Dissociative Identity Disorder D.I.D. ”

It appears this no diagnosis is in addition to her others.

I’ll add, I don’t think “high functioning” and “low functioning” are accurate or valuable terms. Ms. Williams is a good example where such a simple label is somewhat misleading.
Lydia Bush
March 31st, 2012
21:05:19

Jenny McCarthy wrote in her books about how the signs of Autism were obvious in her child BEFORE the seizures she just didn’t know any better because he was her first, and a boy at that. She clearly wrote how when he was diagnosed with Autism and she learned about it it became painfully obvious in his social, speech, and cognitive delays and skills that he had been affected for some time before the seizures became obvious. Don’t talk about someone when you haven’t even read their work.
Mother of two boys with vaccine induced Autism.
Chris
April 1st, 2012
07:44:18

How can we tell when she keeps changing her story?
Lawrence
April 1st, 2012
11:54:50

@Lydia – but I thought Jenny was proud of her “indigo child” as the next step of human evolution? Oh wait, that was story #1 (or was it #2). Then it was Autism, then he was cured, then it was something else, and now I think it is something else entirely – seriously, given her propensity to change her stories more than she changes her clothes, how are we supposed to give her any credence at all?
Thomas
April 1st, 2012
12:57:57

“Mother of two boys with vaccine induced Autism.”

Do you agree with Jenny that your children have no souls?

Father of a children with autism (who is sick of the vaccine-cause-autism lie)
Sullivan
April 1st, 2012
16:31:39

I’ve read her first book. I got it free in a box of therapy supplies someone gave me.

Here is a bit from Frontline where someone finally asked the key question. And she dodged it:

[Questioner:] How long after the MMR was that first seizure?
[Jenny McCarthy:] You know, a lot of people think, and probably from me saying in some interviews, that it was after the MMR I noticed changes.
I don’t think it was just the MMR shot that caused any kind of trigger with autism. I think it was a compilation of so many shots to a kid that obviously had some autoimmune disorders. So I would say maybe a couple of months, a month or so after the MMR, I started to notice some physical ailments such as constipation, rashes, eczema. That was like the first little sign. And then the train just kind of descended from there.

But here is what she said on Oprah in her “louder than words” tour (much earlier)

“Right before his MMR shot, I said to the doctor, ‘I have a very bad feeling about this shot. This is the autism shot, isn’t it?’ And he said, ‘No, that is ridiculous. It is a mother’s desperate attempt to blame something,’ and he swore at me, and then the nurse gave [Evan] the shot,” she says. “And I remember going, ‘Oh, God, I hope he’s right.’ And soon thereafter—boom—the soul’s gone from his eyes.

So, yeah, she says there were signs before the seizures. But was iit a “boom” and the soul is gone or some physical ailments and a slow slide?

We could also go into the question of is it ok to call autism a lack of soul.

And, when was that MMR? If her son was vaccinated by the schedule it was at least a year before the seizures started. Why can’t she tell the public that simple detail?
McD
April 19th, 2012
10:55:44

I feel really sorry that Evan is going to read that some day.

I have a presentation for the third-year behaviour analysis class (and sometimes abnormal psych) which includes an update of my lad’s progress to date for illustration. I have given it every year since he was two, and that first presentation was based on a presentation I wrote when he was 12months old and I used him as demo-boy for a comparative psych lecture. He will be 8 this year.

Each year when I pull it out I am amazed at his progress, and amazed at how my memory telescopes, at what I forget (both high and low points). Jenny’s changing story is perfectly normal, particularly if she didn’t have some reference point to anchor Evan’s first seizure to.

However, it does look like there was nothing at all related to the MMR vaccination. From what is available, the narrative looks to have been largely constructed retroactively when the book came out. Either that, or there was some serious denial/cog dis going on for a few years.

Maybe we can put the extremely offensive stolen soul claim to rest. Jenny has given us a time window for Evan’s disappearing soul – up to a couple of months after his MMR. According to Wiki, that should have occurred by 15 months, so giving her the benefit of the doubt, let’s say Evan’s soul ‘disappeared’ before he was two. That would be mid 2004.

According to Time magazine, Ryan got a diagnosis of Autism in May 2005. The last link below does sort of indicate that it took a while to get a ‘proper’ diagnosis of autism. Which may just reflect that you can only get a provisional diagnosis before the age of three, under the current DSM-IVR. So the May 2005 dx date fits in almost perfectly (Evan was born in May 2002).

But throughout 2006 Jenny was flogging her book “Life Laughs”, during which she wore a T-Shirt advertising her IndigoMoms website:
http://forums.randi.org/archiv.....55744.html

In addition to running her own website, she wrote an article about being an Indigo Mom of a Crystal child:
http://childrenofthenewearth.c.....y/article1
in which she stated:

I knew immediately that changing education in schools was my global life mission.

And finally in December 2006 she was interviewed by TVGuide, again not only mentioning Evan, but noting that she is in the process of writing her next book:
http://www.tvguide.com/news/Je.....40781.aspx

TVGuide.com: How much are you enjoying the writing thing?
McCarthy: Oh, I love it. I absolutely love it. I have a couple of different things in the works, which you’ll see soon.

Then in 2007, the “next book” comes out in September: “Louder Than Words”. A new round of publicity ensues, the IndigoMoms website is pulled, and in a new interview, the last few years are rewritten as heart-wrenching:
http://www.pr.com/article/1076
And her new life’s mission:

When this happened, when Evan got the diagnosis, I knew immediately deep down within me, that I was literally supposed to be the one to come out about Autism and just kind of spread the message to the world.

Frankly I don’t quite know what to make of it.

If she got a life’s mission to spread the word about vaccines and autism in 2005 (with the dx), why state her life’s mission as changing education in schools in 2006, before finally going over the top in 2007. There seemed to be nothing wrong with Evan’s soul when he was a Crystal child through to 2006.

I suspect Jenny was either not aware of the full impact of Autism early on, or thought it was more easily “fixed” than it turned out to be. She may have been expecting Evan to be treated and “over” it soon at the time she was flogging her Last Laugh, and may not have planned to go public at all – she had written all those “mommy books” and branded herself as a comedienne. When the cure didn’t happen she may have lost the plot.
McD
April 19th, 2012
11:03:49

Correction to above: Don’t know why I called Evan “Ryan” at one point in the above post.
Julia
April 24th, 2012
04:55:15

Sel
January 26th, 2010
18:16:39, The vast majority of veterinarians recommend a whole series of vaccines for pups. After that they comply with local regulations on how often Rabies vaccines are required [every 1 or 3 years]. The diseases that are prevalent in the area helps to guide the rest of their recommendations. It is a very small minority of veterinarians that jumped on the anti-vaccine bandwagon for whatever reason[s]; i.e. the veterinarians did not start this modern version of naturalistic-fallacy-based medicine. Please do not use veterinarians as your iron-clad proof that vaccines are unhealthy etc.