[AllieSparks]

I've seen Jenny talk a few times on TV and I have heard her say "this is what worked for my son, it might not work for someone else's child, but there are many available options and this is something that people can try. It worked for my son but that doesn't mean it will work for everyone."

I saw her on Oprah, Larry King, and I think Ellen? I can't remember....but with TV editing, maybe they took out the severity her son has because it's "not interesting news" to non-healthcare workers/viewers....people (in general) want to hear about her son and his success, they "don't care" "how sick" he is.....just a thought....but TV ratings/time constraints/keeping content interesting, I'm sure, is important to producers.....

I think it's good she's talking about it, at least it brings attention to the subject. It's sad "famous people" have to get sick for something to be done but that's the way it works sometimes, I guess....I wish it was different....Michael J. Fox, Christopher Reed.....if it helps one child, one mom, one dad, isn't it worth it? I hope so!

[mercyteapot]

My son does have autism and I don't buy the "cure" notion at all. If your child's symptoms go away with a change in diet, yippee coyotes, I'm delighted for you, but your child had something else going on, not autism. By definition, autism is a lifelong developmental disorder. People who have it can make all kinds of strides and many (including my own child) function so highly that you have to be around for a while before you sense any differences. Nonetheless, they're there and in some shape or form, they always will be.

Jenny McCarthy and Holly Robinson Peete, though? I read a People article about HRP some time ago, it annoyed the crap out of me, but I don't really remember why. Few and far between are any pieces in the mainstream media that I believe present a thorough and accurate picture of autism. Still, those two are telling the truth as they believe it to be. If Larry King ever wanted me to go on his show, I'd do exactly the same- it would just sound much different than Jenny. They do raise awareness and help to keep autism in the public eye, and I do think those are good things, whether I agree with what they have to say or not.

[Spidey's mom]

Crusades Versus Caution
By Thomas Sowell (Used with permission)

Autism is a devastating condition, both for those who have it and for their parents. At this point, its causes are unknown and if there is any cure for it, that is unknown as well.

There are many ways of coping with tragedies. One of the less promising, and often dangerous, ways is to launch a crusade.

Crusades may be emotionally satisfying, politically popular and welcomed by the media. But crusaders are not known for caution, for weighing evidence or for counting the costs, which may extend well beyond the cost in money.

There have already been many casualties in the crusade against autism, and there may be far more if recent recommendations of the American Academy of Pediatrics are carried out to have every child tested for autism twice by age two.

Think about it: How many people are qualified to diagnose autism? Enough to test every child in America? Not bloody likely.

Professor Stephen Camarata of Vanderbilt University has tested and treated children with autism for more than 20 years.

"While it is relatively easy to identify a five year old as autistic," according to Professor Camarata, "it is much more difficult to reliably diagnose a preschooler or toddler."

The word "reliably" is crucial. Anybody can unreliably diagnose autism, just as anybody can unreliably predict the weather or the stock market.

The consequences of unreliable diagnoses of autism can be traumatic for parents and children alike. . . . . . . .

http://jewishworldreview.com/cols/sowell111307.php3

Crusades Versus Caution, Part II
By Thomas Sowell

The recently launched crusade to have every child tested for autism before the age of two has as its reason an opportunity for "early intervention" to treat the condition.
Dr. Scott Myers, a pediatrician, has been quoted by Reuters news service as saying that autistic children who get earlier treatment "do better in the long run."

That may be true if the children are genuinely autistic. But the dangers of false diagnoses of toddlers and preschoolers have been pointed out by Professor Stephen Camarata of Vanderbilt University, who has tested and treated children with autism for more than 20 years and has encountered many cases of inaccurate diagnoses. . . . . .


http://jewishworldreview.com/cols/sowell111407.php3

[mercyteapot]

Children who receive intervention services funded through CA Dept of Developmental Services do so under an at risk category. No diagnosis is made. When my son was dxed at 5.5, I was told it was considered a provisional dx until age 6. Few of my peers were told that, however.

I disagree with the categorization of autism as a tragedy. There are times when it turns a family's life upside down, certainly, but the key to living and growing with autism is empowerment, not the assignment of a victim role.

[rph3664]

Another thing I've noticed is that some people say their kids are autistic when it clear they aren't.

Case in point: I have some relatives who say their daughter is autistic when it's clear that she is mentally retarded. Those are not the same thing.

Another example: Someone on another board told about a relative who had a child with some part of his brain missing. This child has seizures, developmental delay, and cerebral palsy, but they tell people s/he's autistic because it sounds better, plus the media says autism is curable so it must be.

I would like to know how anyone would know that 1 child in 150 is autistic if everyone hasn't been diagnosed. It reminds me of the pablum we've been fed for 20-plus years about 1 million Americans being HIV-positive. How would anyone know that if everyone hasn't been tested?

A woman I work with says there is literally an autistic child in every class in her son's school, but she lives in a small town where everyone's related so I wonder what that may have to do with it.

OTOH, I can think of several people I grew up with in the 1970s who were thought to be retarded or just strange or "emotionally disturbed" (now that's a wastebasket diagnosis!) but I now believe they were/are autistic.

[mercyteapot]

Originally Posted by rph3664

Another thing I've noticed is that some people say their kids are autistic when it clear they aren't.

Case in point: I have some relatives who say their daughter is autistic when it's clear that she is mentally retarded. Those are not the same thing.

Another example: Someone on another board told about a relative who had a child with some part of his brain missing. This child has seizures, developmental delay, and cerebral palsy, but they tell people s/he's autistic because it sounds better, plus the media says autism is curable so it must be.

I would like to know how anyone would know that 1 child in 150 is autistic if everyone hasn't been diagnosed. It reminds me of the pablum we've been fed for 20-plus years about 1 million Americans being HIV-positive. How would anyone know that if everyone hasn't been tested?

A woman I work with says there is literally an autistic child in every class in her son's school, but she lives in a small town where everyone's related so I wonder what that may have to do with it.

OTOH, I can think of several people I grew up with in the 1970s who were thought to be retarded or just strange or "emotionally disturbed" (now that's a wastebasket diagnosis!) but I now believe they were/are autistic.

That statistic, one in 150 is for children in the U.S., not for the entire population. Also, it was derived by a study of medical and educational records of 8 year olds, and we know that younger children have been dxed in higher numbers, so it isn't that clear how it translates to the entire population of children, either, especially since it only studied children in certain states. OTOH, it is an estimate of the number of children actually diagnosed with the disorder, as opposed to children in whom the dx is suspected. And the CDC does identify the stat as an estimate, not an exact representation. The media doesn't always do a good job of relaying that information to readers.

While I am sure that there are some children who are misdiagnosed, I am loathe to identify children who "clearly" have intellectual disabilities (the new official term for mental retardation; it is a mouthful) rather than autism. That line can be about as clear as mud sometimes. If the child you mention has CP, seizures and developmental delay, it isn't a stretch to imagine that autism could be a legitimate dx, too. Many people with autism have other DDs or medical concerns. Finally, many parents grasp on to the autism dx because a sad and unfair fact is that an autism dx frequently qualifies children for more services than one of the other dxes. I have had several parents of children with ID or CP tell me that they are frustrated with our state's seeming bias towards funding more and better services for children with autism than children with other DDs or LDs. That being the case, of course if the word "autism" has been attached, a parent is going to run with that. You do what you have to do to get your child what they need, whether you agree with the rationale used to qualify your child for those services or not.

[Spidey's mom]

"There have already been many casualties in the crusade against autism, and there may be far more if recent recommendations of the American Academy of Pediatrics are carried out to have every child tested for autism twice by age two." . . . . . . . .

Dr. Sowell is responding to the new recommendations to test and diagnose by age two. And to the fact that some who are diagnosing have no business doing that - they aren't trained.

As to the word "tragedy" . .. I agree to a certain extent . . but have to say that initially parents must be scared and upset. I distinctly remember feeling like the bottom had dropped out when UC Davis called me after blood tests supposedly revealed my son had Down's Syndrome. I was pregnant at 43 and so the theoretical risk goes up for older moms. However, the test merely added my age as a risk factor and had nothing to do with anything found in my blood test. I was pretty angry about the way the person on the phone made it sound. However, we would have loved our son regardless. In fact, we are involved with a community here with adults with Down's. And we love them. I get a hug every Sunday from Rusty, who tells me he loves me. He sings the hymns a little off key . . but then so does my dh, who has a "tin ear".

steph

[rph3664]

Mercyteapot, you have a point; maybe the child with part of their brain missing does have an autistic spectrum disorder but that's not the impression I got. The child's parents say s/he autistic and that's all.

I once knew a woman who insisted that her son's developmental delays were caused by his premature birth, and that may have been a factor but it was obvious to anyone with eyeballs that he had Down's Syndrome. This woman and her husband were both in their mid-20s so that may have played a factor in her denial.

What's this about ADD/ADHD affecting 3 to 5% of children, when around here, the percentage of children on medication approaches 30 to 50%? Around here (upper Midwest), schools are VERY aggressive about getting children put on meds, and I have never heard of a child being evaluated for ADD/ADHD who wasn't diagnosed. I know there are lots of people who use this diagnosis to scam SSI, but there can't be that much of it out there.

Where I was coming from is that autism doesn't seem to have the stigma that mental retardation does, and we all know that the media has actually made it out to be the coolest, most fashionable, most wonderful thing that can happen to a person and their family.

[mercyteapot]

Originally Posted by rph3664

...and we all know that the media has actually made it out to be the coolest, most fashionable, most wonderful thing that can happen to a person and their family.

WE DO??? I hope you're not counting me in on that knowledge. I totally disagree. I keep reading and hearing things in the media like "suffers from" and "afflicted with" autism. I'd be interested in seeing examples of articles that you feel portray autism as being wonderful. I don't mean to say that children with autism are not themselves wonderful, because of course they are. Just as children with cancer or diabetes are wonderful. The diagnosis does affect both them and their families, though, and of all the complaints I have about media coverage, Pollyannaism isn't one of them.

[rph3664]

MTP, I can't think of anything off immediately that portrays autism as wonderful, but trust me, if I do I will post it. Like I said earlier, the link I first saw to that Salon.com article said, "Here is a story about autism that will never be in the mainstream press because it isn't all warm and fuzzy."

I heard about "Autism: The Musical." Don't think I want to see it either.

Okay, what about the media's portrayal of breast cancer? Gosh, sometimes it seems that you can't be a real woman unless you have had it. "Nickel and Dimed" author Barbara Ehrenreich addressed this in a recent interview; she is a BCS and when she was diagnosed, she was given what was basically a souvenir catalogue, and she thought the "Breast Cancer Bear" was pretty much the most demeaning thing she had ever seen. My mother is herself a BCS and while she didn't need chemo or radiation, there is NOTHING fashionable about it.

Ever seen a disease referred to as "popular"? I have, and that's where I'm coming from.