[rph3664]

Originally Posted by RXtech

I've always thought it would be really interesting to do some kind of study or survey where we could examine a large number of people in their 40's, 50's, etc. who were classified as MR as children, and see how many of them fit the current diagnostic criteria for autism. I'll bet it's more than a few.

Look at all the people in those age groups and older who are being diagnosed now, and always just thought they were strange or different, and until very recently had no idea their condition had a name. Many of them have had to cope with parents, teachers, and employers who thought that punishment or bullying would "cure" them of their unusual behaviors and now they know they were right all along - they really couldn't help being the way they are. Also, keep in mind that it is no longer considered an embarrassment to have a child who's different in some way. Not so many years ago, it was.

I recently read Pearl S. Buck's wonderful book about her retarded daughter, "The Child Who Never Grew", and she mentioned higher functioning people who said things like "I know I will never get married because I'm queer." Keep in mind that "queer" did NOT mean the same thing in 1950 as it does now! Also, Carol Buck was not autistic; she had PKU, which was not diagnosed until she was well into adulthood and way too late to help her. If she had been born 30 years later, she would probably have had a normal or near-normal life.

[ivanaBEEaRN]

Originally Posted by rph3664

Jenny McCarthy has a child with autism (maybe), so that makes her a goddess or something, it seems. Have you ever seen any of her "comedy"? She's totally warped. And feel free to PM me if you want to know what I heard was the REAL reason her marriage broke up - it's a doozy.

I don't watch her comedy nor do I care why her marriage broke up. She has become a "goddess" because she has given many many parents a voice. She went on TV stating that she was able to "cure" her son with diet and therapy, with her many available resources that many parents of autism do not have.
She is currently one of the only "celebrities" who are speaking out on autism, and she believes in "too many too soon" and many parents are following her lead, as misguided as she may be she has a following, unfortunately she is the loudest component for autism awareness and organization like autism speaks, who are looking at genetics and environment do not get as much media attention as Jenny does.

The reason the vaccine causation debate continues on because there are desperate parents looking for the answer why. They do not want another family to experience autism.


When you child is diagnosed with autism it is life altering, you have this beautiful child who outwardly looks completely normal, but behaves so strangely. That is what is the hardest part of autism, is that the child looks normal so people judge your child and you. Where people would not be so judgmental to someone who outwardly looks disabled.

[rph3664]

Okay, I'll grant you that raising awareness of autism is a good thing. That McCarthy found what works best for her son is even better. BUT you may have missed something that was going on behind the scenes around the time that her book came out, and it did not go online, etc. because the Autism Society, among others, recommended that the kibosh be put on it.

She was talking about how autism is a New Agey form of higher consciousness, that children with autism are "indigo children" and their moms are "crystal people", and she initiated a website about this but it was taken down and you won't find any archival evidence of this online. A lot of people did find that quite off-putting.

[hypocaffeinemia]

Originally Posted by rph3664

Okay, I'll grant you that raising awareness of autism is a good thing. That McCarthy found what works best for her son is even better. BUT you may have missed something that was going on behind the scenes around the time that her book came out, and it did not go online, etc. because the Autism Society, among others, recommended that the kibosh be put on it.

She was talking about how autism is a New Agey form of higher consciousness, that children with autism are "indigo children" and their moms are "crystal people", and she initiated a website about this but it was taken down and you won't find any archival evidence of this online. A lot of people did find that quite off-putting.

Never underestimate the power of google:

http://www.childrenofthenewearth.com...jenny/article1
http://www.babble.com/CS/blogs/strol...-the-deal.aspx
http://web.archive.org/web/200604300...om/index2.html

The last one is an archive of the site she ran but took down.

Here's the last archive of that site before it went blank. The interview is pure crazy: http://web.archive.org/web/200612030...om/index2.html

[rph3664]

http://mikestanton.wordpress.com/200...tism-quackery/

I'll read it in more detail later 'cos I have to go to work.

[rph3664]

Wow, after reading some of that stuff in more detail, I'm surprised she didn't use her money and Jim Carrey's money to set up "The Jenny McCarthy Autism Treatment Centers - Cure Guaranteed" or some such thing.

I'm sure there are indeed autism quacks, just like there used to be (still are, actually) quacks for other hard-to-treat diseases.

[ivanaBEEaRN]

Originally Posted by rph3664

Okay, I'll grant you that raising awareness of autism is a good thing. That McCarthy found what works best for her son is even better. BUT you may have missed something that was going on behind the scenes around the time that her book came out, and it did not go online, etc. because the Autism Society, among others, recommended that the kibosh be put on it.

She was talking about how autism is a New Agey form of higher consciousness, that children with autism are "indigo children" and their moms are "crystal people", and she initiated a website about this but it was taken down and you won't find any archival evidence of this online. A lot of people did find that quite off-putting.

I never said I agreed with what she was saying, I never read her book or much about her I just have been an observer of her and the impact she has had on the autism community of parents because I have a child with autism.
I was making a point that because of her and what she has pushed as her "cure" has many parents believing what she is saying. Which is why the autism/vaccine debate continues on. I believe that she is misguided as she says that she was able to "cure" her son. She also has many more resources available to her and that while she had her son on a special diet I am sure he was also receiving OT, PT, and ST. Therapies which many parents can not afford.
I think she has given many parents a false hope, and someone to blame, mainly the CDC for there child's autism. I wish rather than pushing her agenda and selling books, and scaring parents away from vaccinating their children, she could be able use her celebrity to bring awareness that many children who are on the spectrum do not have the needed therapies and early interventions available to them and that insurance company's do not always cover the therapies
There are many quacks out there who will tell you that they can cure your child of autism, there is the special diet gluten and whey free diets, chelation therapies, rebirth therapy, hyperbaric chambers. None of which have been proven to help or 'cure".
There are just as many quacks saying things like, tv=autism, or the refrigerator mother theory, or people like micheal savage who say autism is a made up disorder.

[rph3664]

Hope you don't think I was insulting you, Ivana; I misunderstood your original post. She is a Playboy model and "actress" who is being hailed as some kind of Jonas Salk of autism, and I honestly believe she is exploiting her son for publicity's sake.

I have a Web friend who tried the special diet for her son - she figured she had nothing to lose by trying - and he experienced a DRAMATIC improvement on it. He went from being completely uncommunicative to being able to go to regular school, although he still has some challenges. Her entire family follows it at home, and they make provisions for when they go to restaurants - mainly bringing their own bread for sandwiches, or his own rice-flour pasta for when they go to their favorite Italian restaurant. She's very realistic about it not working for everybody. Yes, it's hard to do, but raising kids is hard, period, and it's certainly less difficult than having a severely disabled or chronically ill child!

Good heavens, the PKU diet I mentioned earlier is MUCH more difficult to follow than this! And I once had a customer who had to use the GF/CF diet because she had sprue, which nearly killed her, and she liked McDonald's but had to take her own bun with her. The teens always snickered - "She's, like, allergic to our buns".

Treating a disorder is not the same as curing it. I.E. diabetes is not cured with insulin, but it can sure enable a person to lead a normal and fulfilling life!

[rph3664]

Has anyone heard about this study?

http://www.dor.kaiser.org/dors/news/Nov2007_SEED.shtml

I found out about it from someone on a non-medical Web site, and she said the data collected from it will be analyzed over the next few years, and its publication will almost certainly be a huge news story when it happens. She worked with these families, and now that her phase of it is over, she can discuss it with outsiders. They found lots of kids who had disorders that resembled autism but weren't (mostly chromosomal disorders, the most common being Fragile X) and many of them had parents and/or siblings who appeared to be on the spectrum but had never been diagnosed.

She loved her job, and the families were happy to have a diagnosis free of charge, and the very best referrals to treatment methods that were appropriate for their children.