20/20 last night...Autism

[totoro]

Hmmm... Well this is one I don't know how I feel??? Jenny Mcarthy is coming out and saying her son is Autistic. She is also saying it is, basically curable... gluten/casein free free etc. She did not say where he was on the spectrum? He started with seizures and was diagnosis'd with Epilepsy, she did mention he was on medications also...

Some of the comments are interesting to read. While I am glad to have this broadcast for families dealing with this, it didn't get into the fact that it isn't always such and easy happy road, they kind of painted that picture. Like "Oh you just change the diet and they are fixed" BAM!!!


http://abcnews.go.com/2020/Story?id=3571306&page=1

I am glad she is speaking up about it though...

 

[Kathy813]

It is also the cover story in People magazine this week. There is an in-depth article on her story in case anyone is interested.

~Kathy

 

[Nancy]

She was on Oprah last week also. She does not say it's a cure for everyone in fact she says it is not but for her and others it's hope. She went into muchmore depth on Oprah but I suppose time constraints on 20/20 didn't allow that. It was not such a happy or easy road, it was heartbreak.

I think if it worked for her that's great. They are studying that diet now to see if it does help. Hopefully some day they will find what will unlock these kids brains.

Nancy

 

[Stella Johnson]

Oh darn... I missed it. I have been meaning to check into the gluten free diet for a while now.

Most of the shows on Autism that I have seen seem to gloss over the real social issues like rages, meltdowns, etc. They make it sound like it's just a learning disability.

At least they are starting to bring it out into the open. It's a start!

Steph

 

[Dara]

She actually has a book out now about it that i am reading called "Louder Than Words" She talks about how terrifying and difficult everything is, she talks about her marriage crumbeling. I am almost halfway through. It is pretty good though. I am sorry I missed oprah and 20/20 though.

 

[Marguerite]

It is a danger with any disorder or medical condition, where someone finds something that helped them and declares that they have the answer for everybody.

I used to do a lot of volunteer work for an organisation dealing with Chronic Fatigue Syndrome. I saw a lot of people with a lot of suffering but I also saw a lot of people who had (in my opinion) been given the label too readily and often inappropriately. Several doctors became known as specialists in this, even though they were only GPs, because amazingly, every patient they saw came away with a CFS diagnosis. One bloke went to a support group meeting telling everyone that the secret to getting cured was a combination of vitamins, gluten-free diet and positive thinking. After really insisting that he was already feeling so much better and this was helping him, someone finally managed to ask him how long he had been ill. "Six weeks," he replied. "And they were the longest six weeks of my life."
We gently pointed out that according to the Diagnostic Criteria, CFS cannot be diagnosed in under six months. A tentative diagnosis only can be given, and recovery within six weeks by definition can not be CFS.
He was still insisting, "If you all do what I have done, you all will be well too, in just a matter of weeks."

People like this do a great deal of harm.

However, this doesn't mean we should hold back from sharing what works for us - we just have to keep things in perspective and let people take for themselves what we say, use what they want and discard what is not relevant. Anybody using emotional blackmail in sharing their information has some vested interest in 'selling' their ideas. Perhaps they have a book deal, or are trying to sell you some obscure health supplement. Always look for the hidden traps.

I will look forward to seeing this program come to Australia.

Marg

 

[Dara]

I finished her book last night. The thing I did like about it is that she went through doctors and got tests done to see what was going on. It showed that her son was producing too much yeast I dont remember what it was caused from so for her, the diet worked. She did say that there were parents who tried for a long time and didnt see the results so... Basiclly I think she is encouraging parents to do research and use good judgement. All I can really say is that the book was interesting. While I dont agree with a lot of her theories it was a good eye opening book to see what it is like to deal with an Autistic child or a child with delays.

 

[BusynMember]

All of this stuff is really very controversial and unproven. I belong to a big autism group, and, quite honestly, the kids on the diet are not better or worse than the kids who aren't. In fact, my son is one of the highest functioning of all. All autistic kids improve. in my opinion many "doctors" use the inevitable improvements to say, "It's the diet." JMO and now I'll back out of this.

 

[DDD]

If all humans reacted the same way to any treatment it would be
great. I recall very clearly spending ten to twenty hours a week
reading books on diet, mental health, parenting, teaching etc. etc. because my third child was not "normal" and no professional
could tell me what to do with her. In the l960's ADHD was not
named. I tried dietary changes etc. to no avail BUT some people
had remarkable success with the methods that were not helpful for
our family. Finally stimulant medications became available!

Perhaps there are some families that will benefit from her book.
on the other hand, having major dollars to spend finding answers is a luxury
that the majority don't have. Others who are wealthy and famous
have not found a happy ending even though, they too, have been
completely dedicated to their children.

Life is complex. DDD

 

[Dara]

I read the book and it was good to hear her story. I agree, what works for some doesnt work for all and when you are famous, you do have resources that the rest of us dont have. After letting the book sit for a while I felt it was a little strange. Her sons ordeal was terrifying with all of the seizures and everything but her point of view is quite different. ALl of the things she speaks about is all very controversial as MidwestMom has said. Everyone has a diiferent opinion or view about it. I have very mixed feelings about what she has said mainly because nobody knows for sure what may or may not be the cause of autism and to add to the fact that it is different in almost every child. Autism is such a mystery in so many ways that it is hard to grasp. I am now babbling. I better go rest while I can. Sammy was up at 6 am so...