New here but not new! Older Aspie Son--Jenny McCarthy question

[Chris in VA]

Hi all,

I post a lot on the Gen and Curriculum boards, occasionally on high school and college, so many of you are familiar "faces!" as you do, too.

Ds20 has never been diag'd with Aspergers, and doesn't fit all the criteria for PDD-NOS, but we strongly suspect he is on the spectrum. I often say he would be easily assigned the Aspie diag if they'd just extend the spectrum 3 more feet!

Anyway, he is now dealing with college issues--more relationship stuff as an adult. He has been thru some therapy for single episode depression and we are trying to get a discount at Virginia Commonwealth U's Autism clinic. It is right where he goes to school, and comes highly recommended. It's hard to find adult therapy for Aspies, as I've found.

Anyway--here's my question--

What are your opinions on Jenny McCarthy's POV about autism being linked to heavy metal loads, viral/bacteria infections, yeast, etc.? I have picked up her book and am intrigued, but I'm sure you all know much more about it and would love some of your opinions! TIA

[Mesa]

ITA with her book.


We have seen huge improvements in our aspie son after doing chelation, supplements and a GF/CF diet.

He hugged his grandma not too long ago. I cried. It was the awakening i was looking for!

[specialmama]

I think there is some merit there (for biomedical intervention), for some kids, with some forms of autism. Not all.

The lady herself? The idea of a "cure"? I can't stand. I can't stand the book. I can't stand the artificial hope and following grief *most* parents experience with dangling carrots such as these.

Gets my blood boiling.

ETA: If you're interested in researching this stuff further, I'd suggest DAN! (http://www.defeatautismnow.com/) as a reputable source of information.

[asta]

I think it is a load of crap.

I think that while many people on the spectrum truly do suffer from food allergies and intolerances (and OCD, and ADHD, and, and, and, and...), and that, time and time again, people find that fixing one's diet may ameliorate symptoms of one kind or another... (eg: dropping wheat reduces my seizure activity, dropping red dye reduces DSs hyperactivity)...

If your kid is magically "cured" of their autism by not eating eggs? They weren't autistic to begin with.

Every bit of science out there shows ASD to have a complex neurological basis wherein the person literally processes information in a distinctly different manner.

I'm an aspie. My child is an aspie. My sister is an autie. One of my nieces (different sister) is an autie. Several of my friends are on the spectrum. One of them had to be chelated for (gasp!) heavy metal poisoning. Guess what? She is still autistic.

Load of crap.

I teach my son coping strategies. I teach him to eat healthfully. I confer with my friends on the spectrum about the best "tricks of the trade" for surviving in the 21st century. No one called us ASD in the 70s. They called us a lot of *other* things, and they beat us up, but we didn't get accommodations, and insurance didn't cover anything. Again, gasp - most of us are quite successful. I'm certain your son will be as well.


a

[Alice]

I read both of Jenny McCarthy's books as I thought it was important for me to with so many patients of mine reading them. I disagree with almost everything she says.

But I mostly wanted to suggest if you haven't read them a few books by adults with Asperger's that I really enjoyed. If nothing else, it might give you and your son the perspective of someone who grew up with Aspergers.

Look me in the Eye by John Elder Robison (Brother of the guy who wrote Running With Scissors. He grew up undiagnosed, people thought he was just a bad kid or even psychopathic. Very dysfunctional family which made things even harder. But it's a really inspiring read to see how he took his strengths and became very successful, even in a time when he had no official help. He wasn't diagnosed until about age 40.)

Born on a Blue Day by Daniel Tammett (This is by a guy who is has Asperger's and also is a savant so his tale is different but also similar in that he was not officially diagnosed until very late. His savantism is really fascinating to read about. He's also has something called synthesia--he sees numbers as colors---which is just incredibly interesting.)

Seen in the Idiots by Kamran Nazeer. (Written by a guy who was diagnosed early on with autism and attended a special school for kids with autism. He is now a successful government policy advisor in Britain. He goes back and tracks down 4 or 5 of his classmates to see what happened to them. Just to warn you, one of them committed suicide so that might not be good for your son to read at this point, knowing what you've posted about his struggles. The others have achieved variable degrees of success.The title comes from a phrase one of the kids used to repeat over and over again when they were in school together.)

Also Temple Grandin's books are really amazing. The one I read was Thinking in Pictures.

I know books won't help you cure your son or really help that much, but I did think they might be interesting to you or him or both.

[8FillTheHeart]

I read both of Jenny McCarthy's books as I thought it was important for me to with so many patients of mine reading them. I disagree with almost everything she says.

But I mostly wanted to suggest if you haven't read them a few books by adults with Asperger's that I really enjoyed. If nothing else, it might give you and your son the perspective of someone who grew up with Aspergers.

Look me in the Eye by John Elder Robison (Brother of the guy who wrote Running With Scissors. He grew up undiagnosed, people thought he was just a bad kid or even psychopathic. Very dysfunctional family which made things even harder. But it's a really inspiring read to see how he took his strengths and became very successful, even in a time when he had no official help. He wasn't diagnosed until about age 40.)

Born on a Blue Day by Daniel Tammett (This is by a guy who is has Asperger's and also is a savant so his tale is different but also similar in that he was not officially diagnosed until very late. His savantism is really fascinating to read about. He's also has something called synthesia--he sees numbers as colors---which is just incredibly interesting.)

Seen in the Idiots by Kamran Nazeer. (Written by a guy who was diagnosed early on with autism and attended a special school for kids with autism. He is now a successful government policy advisor in Britain. He goes back and tracks down 4 or 5 of his classmates to see what happened to them. Just to warn you, one of them committed suicide so that might not be good for your son to read at this point, knowing what you've posted about his struggles. The others have achieved variable degrees of success.The title comes from a phrase one of the kids used to repeat over and over again when they were in school together.)

Also Temple Grandin's books are really amazing. The one I read was Thinking in Pictures.

I know books won't help you cure your son or really help that much, but I did think they might be interesting to you or him or both.

:iagree:

I haven't read all the looks listed here, but read Robinson's and Grandin's. (I couldn't let ds read Look Me in the Eye b/c I was afraid it would give him too many bad examples to attempt to replicate! But, our ds is extremely immature :tongue_smilie:)

You have my complete sympathies trying to find help for adult Aspies. It is pretty much non-existent as we have also found. The fact that your ds is even in college and functioning is a huge accomplishment.

[asta]

Oh - dang - completely forgot: Wrong Planet (http://www.wrongplanet.net/forums.html) forums. Awesome place. By spectrumites, for spectrumites. Any question he or you could EVER have, you can get it answered there. There is even a sub-form specifically on school and college life.

There is also an autism "ring" of websites (http://www.wrongplanet.net/index.php) off the main site.

HTH


a

[chiguirre]

We tried the DAN protocol when dss were first diagnosed. Most of my IRL friends have also tried it to one degree or other. Most of us have seen no difference. Some have seen one element help their dc. None have seen their dc "cured". Even kids who are mainstreamed face some issues.

The GFCF diet is hard to follow, but it's certainly worth giving it a try if your ds wants to. An adult would know if they suffered from yeast issues because it does produce physical symptoms he'd notice. Trying fish oil supplements can't hurt either. I'd say pursuing this course is completely up to him, he's an adult and largely in charge of his diet and health regimen. You might need to help him learn to cook GFCF foods so that it's easier for him since most college freshmen aren't great chefs.

Good luck to both of you! I hope your ds finds the support he needs to succeed.

[specialmama]

Also Temple Grandin's books are really amazing. The one I read was Thinking in Pictures.

I know books won't help you cure your son or really help that much, but I did think they might be interesting to you or him or both.

:iagree::iagree::iagree:
You can even search for Temple Grandin on youtube and see her. I met her in Toronto and she's fascinating. I believe she is the strongest voice out there for people on the spectrum.

[Laurie]

I just wanted to mention that in case you haven't been to this website you might want to take a look at it. The blue boxes on the left side of the home page include support groups and you can find what's available in your state. There might even be an adult support group for your ds.
www.aspergersyndrome.org

[Chris in VA]

Thanks so much, all. VCU has an adult therapy group, and adult support, as well as diagnostic evaluations--I feel this is really a God-gift! It's the only university ds considered, because his major wasn't offered anywhere else in VA. How "lucky" is that? lol

I will help him investigate further, but you are right, it's his choice.

[Stacy in NJ]

I do have a very close friend with a dd on the spectrum.

I love this article written my Tim Page, an Aspie and also the former music critic for the Washington Post, who was diagnosed as an Aspie at age 45. http://www.newyorker.com/reporting/2007/08/20/070820fa_fact_page

Also here's his book: http://www.amazon.com/Parallel-Play-Growing-Undiagnosed-Aspergers/dp/0385525621/ref=sr_1_1?ie=UTF8&s=books&qid=1260152800&sr=8-1

[asta]

From the first article:
The symptoms of this developmental disorder include early precocity, a great ability to maintain masses of information, a lack of ability to mix with groups in age-appropriate ways, ignorance of or indifference to social norms, high intelligence, and difficulty with transitions, married to a preternatural ability to concentrate on the minutia of the task at hand.”


This is not necessarily the case, because...

We are informally referred to as “Aspies,” and if we are not very, very good at something we tend to do it very poorly. Little in life comes naturally—except for our random, inexplicable, and often uncontrollable gifts—and, even more than most children, we assemble our personalities unevenly, piece by piece, almost robotically, from models we admire. (I remember the deliberate decision to appropriate one teacher’s mischievous grin and darting eyes, which I found so charming that I thought they might work for me, too.)


Or, as one of my dearest friends puts it: "we fake it till we make it".

Many people say to me "oh DS couldn't possibly fit that criteria, look how well he gets along in X social situation". They don't see DS after he gets home, mentally and physically drained, needing "alone time" for hours, and to sleep for another 12.

Acting is hard. It can get easier, but even at 42, I feel it to be draining.


a

[hsbaby]

I really dislike her approach. I think it's great if she found something to help her son. I think it's great for her to share what worked for HER. However, I don't like that she acts as if she has found a cure that will work for everyone. I, for one, followed the DAN protocol with my dd for about 2 years. We did the GFCF diet, supplements, etc. The only thing truly impacted was our wallet. The GFCF diet is not cheap to follow, very time consuming, and did not improve my dd's symptoms. It's great if it has helped others, but it is by no means a cure. We didn't have any better luck with the supplements. Those too were very pricey. We saw no results. Dd is now 12 and we just started her on meds for the first time. Guess what? It's the only thing that HAS helped. However, I wouldn't go on TV or write a book telling everyone with a child on the spectrum that this is the way to go. I also want to add that I don't believe my dd' s Autism was brought on by vaccines. I knew from the time she was born something wasn't right....

[fivetails]

What are your opinions on Jenny McCarthy's POV about autism being linked to heavy metal loads, viral/bacteria infections, yeast, etc.?

Honestly? I think you can find much more reliable sources of medical information than a playboy bunny. ;)

[AnitaMcC]

Hi all,
What are your opinions on Jenny McCarthy's POV about autism being linked to heavy metal loads, viral/bacteria infections, yeast, etc.? I have picked up her book and am intrigued, but I'm sure you all know much more about it and would love some of your opinions! TIA

Honestly? I think that in a some people this makes a difference. Environmental toxins affect the brain and the brain is so complex. It is just remarkable about what we have learned so far about the brain... and infinite more that we still have left to learn.

But for majority of people on the spectrum... I think they are the way they are because that is how they are created. IMO... genetic linked autism is not cureable. Their brains are wired differently due to genetics or in some cases some form of brain injury from the womb or very early infancy. But it is not something that can be cured. I also believe there is a genetic link between autism and ADHD.

And IMO autism (and ADHD) is not a horrible disease to fear. Much of the autism and ADHD are also very positive traits. Now it doesn't mean they don't have work cut out for them. They still have to learn respect, manners, social skills, proper behavior, etc to have a happy, productive life just like all humans need to do. IMO a world without autism spectrum/ADHD people would be a very dull and sorry world. I just love how God created us to be who we are.

[newlifemom]

I do have a very close friend with a dd on the spectrum.

I love this article written my Tim Page, an Aspie and also the former music critic for the Washington Post, who was diagnosed as an Aspie at age 45. http://www.newyorker.com/reporting/2007/08/20/070820fa_fact_page

Also here's his book: http://www.amazon.com/Parallel-Play-Growing-Undiagnosed-Aspergers/dp/0385525621/ref=sr_1_1?ie=UTF8&s=books&qid=1260152800&sr=8-1


Fascinating! That article so resonated with me. I thought of myself and my ds. Hmmmm, sometimes I really wonder if I don't have it as well.

[WishboneDawn]

And IMO autism (and ADHD) is not a horrible disease to fear. Much of the autism and ADHD are also very positive traits. Now it doesn't mean they don't have work cut out for them. They still have to learn respect, manners, social skills, proper behavior, etc to have a happy, productive life just like all humans need to do. IMO a world without autism spectrum/ADHD people would be a very dull and sorry world. I just love how God created us to be who we are.

I was listening to a radio documentry on the CBC yesterday and a mother of two autistic boys was livid about Jenny McCarthy and her peddling of a cure. Partly because of the claims but also because of the idea of a "cure".

She maintained that if there was a cure tommorrow she wouldn't give it to her sons because autism is such a key part of who they are. I have to say that as someone with ADD, I feel much the same about ADD. She further said that if there was a cure she wanted it to be for the way "normals" treated her son. :D

[AnitaMcC]

I was listening to a radio documentry on the CBC yesterday and a mother of two autistic boys was livid about Jenny McCarthy and her peddling of a cure. Partly because of the claims but also because of the idea of a "cure".

She maintained that if there was a cure tommorrow she wouldn't give it to her sons because autism is such a key part of who they are. I have to say that as someone with ADD, I feel much the same about ADD. She further said that if there was a cure she wanted it to be for the way "normals" treated her son. :D


I know I don't want to "cure" my boys.... they are who they are and I bet their awesome personalities wouldn't be the same without the autism spectrum/ADHD they have.