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.
Read more: "Autism Blog - Jenny McCarthy’s son was never autistic? « Left Brain/Right Brain"
Sign up for the OV Daily Newsletter
OV Social
I would just like to say that aside form the smart, and insightful comments here, something else is still missing .
No one is mentioning that whether or not Ms. McCarthy's son was ever autistic , there are millions worldwide who are on the spectrum. These people are being ignored, discriminated against and even abused.
Even in the year 2010, pour leaders, doctors , scientists, and various experts still act as if they are confused and dumbfounded by autism -what it is, what it means, and how to support , accommodate, and educate all people on the spectrum along with the typical citizens.
If McCarthy's son was never autistic, and it was misdiagnosed, that is sad. If Ms. McCarthy's son was in fact autistic then we need to help people realize that means he will always be autistic and that is not a death sentence or a terrible tragedy .
The tragedy is the misinformation and the fact our loved ones and neighbors on the spectrum are still ignored by our society .
Emily Malabey
President, ICAA
internationalautismcoalition.com
Perhaps...Though I would suspect that debating her son 's diagnosis entirely misses the point.As much as her well publicized ignorance is troubling and somewhat sad, I think it's dangerous to start speculating the authenticity of another person's diagnosis. Attempts to sort out "genuine" autism from "fake" autism encourages stereotypes and discourages discernment of nuances and complexities--And that's precisely what needs to happen in the societies in which we live; getting others to realize the world is not always easily assimilable.
When will individuals start to really listen to that fraze " nothing about us without us" why on earth individuals choose to listen to individuals not on the autism spectrum themselves is beyond me... since discovering aspergers and my many other neurological conditions etc... the only people that have make sense or helped are those on the autism spectrum with lived experience...
The professionals are still looking for answers themselves and to be honest unless they have the booker prize feel life time experiences have more to often in the reality of being on the autism spectrum... But foraA celebrity parent to get so much support and recognition when not backed by the autism community is beyond me... this discussion continually goes in circles, do only those with a higher intelligence understand!
I've noticed this, too. McCarthy's story isn't about a typical presentation of autism . She talks about him having a few autistic traits before his seizures began, such as hand-flapping (though many typical children flap their hands, too); so it could be any one of a number of things--
1. Evan had autism beforehand, which without the seizure would likely have been diagnosed as Asperger's (a type of autism in which speech development is not delayed). However, the seizures caused problems with his development--severe epilepsy does this to typically developing children too--and he had to work hard to regain the loss.
2. Evan never had autism, and suffered a regression thanks to the effects of the seizures (the Landau-Kleffner idea).
3. Evan is strongly autistic and would have lost speech whether the seizures had happened or not (regressive autism is rare; generally the child never gains speech to begin with). However, as most autistic children do, he took advantage of a friendly environment and helpful therapy/ education , and learned how to get around in an unfamiliar world.
The idea that Jenny somehow saved her son from autism is laughable in any of those three cases; and in either case 1 or 3, Evan is still autistic. (From videos I've seen of him, it seems to me that he probably still is. He reminds me of many high functioning autistic children I've met.)
Given a good environment and sensible education, autistic children inevitably progress. Many progress to complete independence (generally in their mid twenties, sometimes earlier), others need intermittent support, others live with families their whole lives. However, they do learn, though the progress may be slower than that of a typical child, just like a developmentally delayed child with Down Syndrome might progress slowly but surely.
Ms. McCarthy was doing what any mother with an autistic child does--she treats his health problems, finds him a decent therapist to teach him the things he needs to know, loses a little sleep, worries a little, tangles with the education system, and above all loves her child. The difference between her and the average autism mom is that Jenny seems to want to be praised for doing what any mother would do for a child who learns differently, and has made her son's disability into a soapbox for her own issues. Unlike many autism moms, she doesn't seem to want to accept that her son could possibly be happy and still be different.