September 26, 2007

"Everything I thought was cute was a sign of autism and I felt tricked."

Jenny McCarthy writes about her son Evan:
I guess the doctor sensed this from me because he turned my head back toward him and said, "He is still the same boy you came in here with."

No, in my eyes he wasn't. This was not Evan. Evan was locked inside this label, and I didn't know if I would ever get to know who Evan really was. All the behaviors I had thought were personality traits were autism characteristics, and that's all I had. Where was my son, and how the hell do I get him back?


Internet Ronin said...

"Because I get so excited and then I fly just like the angels do."


Methadras said...

Jenny McCarthy said...

I looked at the doctor with pleading, tearful eyes, "This can't be. He is very loving and sweet and not anything like 'Rain Man.' "

I'm not sure whether to laugh or cry at this one.

Jojo said...

Maybe the extra attention autism is getting, thanks to Jenny, will lead to something good... like more research funds so scientists can pinpoint a cause.

Bissage said...
This comment has been removed by the author.
Bissage said...

I am completely jealous. I wish my kids had autism. Then I could author a new book and talk about their autism on “Larry King Live” tonight at 9 ET.

But seriously, that scene she described took me back to a very similar incident when my mother took me to the specialist. She even wrote about it:

[The specialist] closed the door and pulled his chair up close to mine and put his hand on my hand. He looked at me with sorrowful eyes and said, "I'm sorry, your son has [an extremely large penis]."

P.S. Just imagine what it was like later that fateful day when Ms. McCarthy went to bed and said her prayers. Boy, oh boy, did God ever get an earful! Serves HIM right!

Everything I thought was cute was a sign of autism! I feel tricked, God. You tricked me!

Messianic rebellion, indeed.

Pogo said...

She was ranting on Oprah, very unlike this article. She comes off as fairly anti-science and anti-doctor in a live discussion. Jenny McCarthy believes that the MMR vaccine--which does not even contain the disputed mercury preservative thimerosal--caused her son Evan's autism. Thus far, no epidemiological studies have shown any link between MMR and autism.

She said "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?'" McCarthy told Oprah. "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.

"And I remember going, 'Oh, God, I hope he's right.' And soon thereafter--boom--the soul's gone from his eyes."

And her definition of science was “Evan is my science”". Not a big deal, but you need to know her biases.

My brother has autism. It is sad. Bruno Bettelheim himself told my Mom that 'she rejected him in the womb' and therefore it was her fault. So it was worse than just getting the wrong shot back then.

The New Age approach to this disorder mirrors its misapplication elsewhere. She'll create alot of noise and lots of money will be misspent. Worse, she'll discourage people from getting vaccinated.

Her kind of angry blaming populist consumerist approach to her son's care is counterproductive, and seems more about Jenny than Evan. But it will soon be forgotten. Sound and fury and all that.

NE2d said...

This is sad. My wife read her books Belly Laughs and Baby Laughs (which Ms. McCarthy wrote about her son Evan) when she was pregnant with our son and loved them. They were very funny books; my wife often read passages to me.

Unfortunately, Ms. McCarthy is also drawing more attention to the vaccines-cause-autism theory, which I understand is junk science.

Jennifer said...

Hmm. When I first heard she was writing a book about this, I was seriously concerned. I mean her previous statements about her son were fairly ridiculous. Something about her being an Indigo Adult and her son being a Crystal Child who represents the next phase in human evolution. I was worried she was going to be encouraging people to turn away from doctors and not seek out help for their autistic children.

This excerpt seems to lay those fears to rest. But Pogo's comment makes it sound like this excerpt isn't representative.

Gah. Maybe I'll have to actually read the darn book.

Internet Ronin said...

Never heard of her before now. Found this piece was moving. Pogo's comment was eye-opening and alarming. Too bad she's yet another modern-day Luddite. (Actually, it sounds more like she needs to find someone or something else to blame for her child's condition because it is impossible for her to accept the fact that, perfect though she may be in every way in body and mind, life does not always follow our personal orders. But I'm probably being too harsh)

Joan said...

The linked article was unexpectedly lovely, and honest in a way a lot of these stories aren't. My oldest was diagnosed with Asperger's Syndrome, highly functioning autism, at the beginning of this year. He's 10. I know exactly the feeling of having the carpet pulled out from under your feet. Like McCarthy, I was familiar with my son's behaviors, unlike her, I knew that he had a few quirks. I just didn't realize that the quirks added up to a bona fide diagnosis of AS.

There's not a whiff of anti-vaccination hysteria in the linked piece, which is good -- but how horrible of McCarthy to take that road.

jane said...

God bless, Pogo.

We need diligent medical science and the intuition of moms and dad, neither of which are always on the mark.

Have one distant retarded cousin born to an older mom in the 40s and neighbors with autistic kids diagnosed to varying degrees. So tough and not easy. Where science and parent knowing are/ will be reconciled is where the afflicted and their loved ones will surmount, we can only hope.

The Drill SGT said...

for better or worse, not all children will be above average.

stuff happens.

parents lash out at potential causal factors regardless of any evidence that there was a cause.

sometimes nobody is to blame

sometimes one can only blame bad luck in the genetic roulette

on one level you feel sorry, and on another you feel like shaking the parents.

Blake said...

New Scientist sez no connection.

I've been relatively agnostic on the subject, as I know vaccines do cause problems (from minor rashes to death), but that doesn't mean that they cause this problem.

Rick Lee said...

Imagine how bad she'll feel if this turns out to be true.

MadisonMan said...

I greatly dislike the tendency to label kids, as if, for example, all gifted kids, or all autistic kids, or all kids who suffer from halitosis, are the same. It's too much of a shortcut. No child is the same.

Pogo said...

I can't claim any expertise on the subject, whether from textbooks or proximity. I learned little from my brother's autism, except perhaps empathy for disability. I'd rather he'd been normal. My Dad insists he was normal, until he was about 4 years old.

Jenny McCarthy's piece was well-written and full of pathos. Jane is right in that parents quite often know what the doctors cannot see, but are ignored all the same.

At this point, Jenny is flailing, swinging her blame around and hitting everything in the room. It's the dance of anguish, the cry of the helpless, the song of the those about to acquiesce to fate.

I have a hard time criticizing her, but that she feels confident to speak on a subject about which she knows very little. How very like a man.

When I was little, I saw young boys at their very cruelest with my brother, and my dad at his most angry when he discovered it. That fierce protection is what I see in Jenny, so I have some compassion for her. I hope she learns to see that she doesn't really know very much about this at all.

jeff said...

The poor woman just found out her child is autistic. Probably should cut her a little slack. I wish she wasn't on the anti-vaccination bandwagon, and I hope she comes to her senses, but cut her a break.

Galvanized said...

This doesn't really relate to McCarthy's experience, but I'm just glad that parents of autistic children are finally released from the old theory of detached parenting/lack of warmth and affection causing autism. Coming up in the seventies, that belief was still prevalent then. I can't imagine the disappointment of knowing your child is locked in a shell, and the sense of urgency that a parent must feel in freeing him from that mental and emotional isolation. I admire any parent that tries to put word out to other parents of her experience, because it is a highly personal experience. And, in my humble opinion, it's better to turn over every stone in the process than to leave even one unturned. Bless her heart...and her boy's.

When my twins were tiny, I was convinced one was autistic and even had the pedi evaluate him. He averted my gaze, participated in self-stim habits, endlessly arranged things, and seemed oblivious to others' company, almost like walking through us. However, I saw this diminish greatly over time, and he's extremely social and extroverted now. Maybe there's a neurological breakpoint that these kids don't hit. No matter, autism is fascinating to read about. Remembering that anxiety I felt in hoping he wasn't autistic, I still find myself keeping up with autism in all of its many forms, especially in reading about others' accounts of it.

peter hoh said...

Pogo, I'm sorry that your mother was told that she was to blame for your brother's autism. What a horrid idea for Bettelheim to peddle.

Some years back, I saw a documentary about this idea that cold, distant mothers caused autism. "Refrigerator Mothers," they were called. What lousy science.

By the magic of the Google, here it is.

Zeb Quinn said...

Autism has been around for a long time, and they did used to hypothesize that distant, cold, and aloof parents were the cause. Or at least a cause. A very cruel thing to say, especially since the truth is they never really knew what caused it. Then in the last 15 years or so the incidence of it has exploded off the charts from the rate of incidence in decades prior to that. One interesting theory as to what's causing the dramatic increase is that it's caused by the effects on the fetal brain of the use of ultrasound on the pregnant mother. If you overlay a chart showing the steady increasing use of ultrasound techonolgy through the 80s, 90s, and into the 2000s and of the populations that it was used on, over a chart showing the growing rates of incidence of autism by population and year, the arcs match up almost exactly.

Ralph said...

More women are having babies later in life, and after more different sex partners. More children go to daycare than 30 years ago. A lot has changed besides vaccines.

Internet Ronin said...

Pogo, I jsut want to thank you so much for your posts here today.

Pogo said...

Thanks, IR.