Jenny McCarthy and autism - page 2

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... Read More

  1. by   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.
  2. 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.
  3. by   mercyteapot
    Quote from 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.
    Last edit by mercyteapot on Nov 17, '07
  4. by   Spidey's mom
    [FONT=Arial, Helvetica]"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
  5. by   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.
  6. by   mercyteapot
    Quote from 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.
  7. by   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.
  8. by   Spidey's mom
    Quote from 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.
    I've definitely seen that in reference to breast cancer. Good point.



    steph
  9. by   NotReady4PrimeTime
    Quote from mercyteapot
    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.)
  10. by   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.
  11. by   mercyteapot
    Quote from SoundofMusic
    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.
  12. by   rph3664
    JMHO to Soundofmusic: I believe that most high functioning autistic people were not recognized as such until very recently. Not so long ago, parents of a child like yours would have tried to punish those behaviors out of the child and loaded them up with laxatives and enemas.

    A woman I worked with a few years ago (I worked in a grocery store in the pharmacy, which was next to the floral department where she was department manager) said that when she was a child, she had a teacher who would smack her across the face for not making eye contact. :angryfire Can you imagine doing that nowadays?

    I have heard a lot of stories about adults of all ages seeing themselves in a diagnosed related child, and being evaluated and yes, they are on the spectrum. If I already said that on this thread, I apologize for repeating myself.
  13. by   SoundofMusic
    Rph, I know what you're saying, but I can't buy into the belief that we're just now diagnosing it better. Believe me, you WOULD HAVE NOTICED a child like mine, back then. Discpline does not end the behaviors . ..it only worsens them. He has or had, marked constipation, vitamin and immune defieciences, many tantrums, escaping behaviiors, and a severe speech and language delay. He's not just "weird" as many people think autistic people are.

    I don't believe there are all that many high functioning autistic adults out there now. Where are they? Autism just doesn't go away . .we'd know it and they'd be everywhere if the rates were the same back then that they are now.

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