Jenny McCarthy and autism

[EmilyUSFRN]

Has anyone been watching Jenny McCarthy and Holly Robinson Pete go around the syndicated television circuit and discuss their experiences with autism?

First off, I'm a pedi nurse, not a mother so the sticky for parents, I don't think I belong to that just yet...

But anyways, I was wondering what you guys thought about this? I personally have mixed feelings... on one hand, its great that attention is being brought to this condition since there hasn't been too much previously.

But, what I have issues with-- Jenny McCarthy went on Oprah stating that her child is pretty much cured by cutting dairy and gluten from the diet. Tonight she was on Larry King (maybe it was a rerun since it is Sunday night and all...) and was discussing it there too.

Maybe I missed it, but there were not any mention of the type of autism her son has, the severity, etc. She also just said that she "googled" autism and hundreds of pages came up discussing cures... but as we all know, anyone can make a site up with whatever they want to say without any kind of research or evidence.

Now, I am all for nontraditional means of healing, including changes in diet, but I have a feeling that because she is saying this on tv, in particular, Oprah, that there is going to be a lot of backlash against the medical community because of lack of "cure" for their children, even though autism is such an individualized condition.

Just wondering what you all thought?

[Spidey's mom, ADN, BSN, RN]

[color=#336666] 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

[color=#336666] 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

[LydiaNN]

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.

[LydiaNN]

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, ADN, BSN, RN]

"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.

[LydiaNN]

...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.

[Spidey's mom, ADN, BSN, RN]

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.

I've definitely seen that in reference to breast cancer. Good point.

steph

[NotReady4PrimeTime, RN]

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.

Ain't that the truth! When we were getting things in order for the transition from children's services to adult's for our son 8 years ago, one of the pieces of the puzzle was a neuropsych assessment. So the neuropsychologist interviewed me to get an idea of his level of function. Then she went to his school to assess him. She did the assessment in a room he'd never been in before, full of things to look at and new noises and smells. She didn't meet him before hand, and she didn't observe him in the clasroom or at home. So when the final document arrived, I was not surprised to read that he functioned about as well as a 2 year old... which was so far off the mark as to be a joke. But I realized that this little lie was going to mean I'd never have to fight for services for him ever again. (And that was true... until we moved to another province and have had to prove everything again... every year. But that's another story.)

[SoundofMusic]

I've been watching Jenny with much interest as I have a son with PDD-OS or high functioning autism. I am also a new grad RN.

We put our son on the diet, gave him tons of supplements, and did ABA therapy. We've also done some RDI therapy. He went from hardly verbal to now needing very little assistance in a general ed classroom. We continue to use digestive enzymes to break down the gluten and casein. People now have a hard time recognizing he has any disability at all.

He had several intestinal issues before the diet. He was constipated all the time. Now he has beautiful stools (sorry, autism moms talk poop a lot).

You can't blame parents for trying . . . sorry, but pediatricians have little to offer at this point, and if we didn't try something, we were going to die from lack of sleep and just continual stress from his awful behaviors. Peds would usually look at me like I was crazy ... and they dragged their feet on a diagnosis for him to begin with. for 2 years!

He used to bolt out the door and down the street . .now he sticks right by me. He could actually start sitting still for his therapies after the diet.

Seems to me many skeptics out there, docs included, should not discount the reports on the diet. There's a reason it works for some children.. .and should be encouraged as a trial, IMO.

There is also a Dr. Yasko who many parents like to follow. She's a bit out there, but was written up in Discover Magazine lately (April 2007). We have done her protocol with much more improvement as of late.

Expensive? Yes -- but worth it to see your child improve.

I truly feel there is an environmental cause for autism. . .has to be. That could include vaccines, or not, but it's there. I believe there is a genetic predisposition and there is something causing certain kids not to tolerate specific environmental assaults. Go ahead and flame me, but I "live it" everyday. We used to give 11 or so vaccines before the age of 2 ...now we have, what, 22+ vaccines, and more coming down the pike all the time.... really makes ME wonder.

[LydiaNN]

I truly feel there is an environmental cause for autism. . .has to be. That could include vaccines, or not, but it's there. I believe there is a genetic predisposition and there is something causing certain kids not to tolerate specific environmental assaults. Go ahead and flame me, but I "live it" everyday. We used to give 11 or so vaccines before the age of 2 ...now we have, what, 22+ vaccines, and more coming down the pike all the time.... really makes ME wonder.

Genetics loads the gun and environment pulls the trigger.