Asperger's Syndrome & Autism Spectrum Disorders

[The Laughing Man]

Very interesting Menolly. Shows how little I actually know, and how more people need to be more aware of this certainly. Good to see them making progress with it, and good to see you, Hyperception, and Beorn are too. Keep up the great work.

[Menolly]

heh.

...sorry for going off on you, Es...

[The Laughing Man]

not at all Menolly. you'll never have to apologize to me (especially) or anyone else for your passion.

[Menolly]

not at all Menolly. you'll never have to apologize to me (especially) or anyone else for your passion.

*blushing prettily*

[Ki]

My argument against that Es is the change in the definition of "autism spectrum." I honestly believe it has been just as prevalent in the past, but those who could not compensate at all where viewed as "eccentric," "odd," "off-base," etc.

It is the defining of the disorders and prevelance of testing that is causing the appearance of an epidemic. Now, is this of more harm than good? That is a whole 'nother kettle of fish.

excellent point, menolly. i am of the same opinion as you, that broadening that 'spectrum' diagnosis has given the appearance of an epidemic.

you certainly know your stuff. as i would expect you would, being the kind of mom that you are.

[Menolly]

*ducking head and blushing*

awww...geee..

Thanks Ki.

...dealing with this is why we have chosen for me to stay home and do without so many things. I better know my stuff in regards to it...

[Mortice Root]

That's a good study, Quick Ben. Thanks for posting the link.

There have studies done fairly often over the past 10 years or so, all indicating that there is no link between any specific vaccine (MMR) or vaccine additive (thimerosal) and autism spectrum disorders (ASD). It's probably one of the most frequently studied non-effects in recent years. And even when it had been shown that thimerosal had no proven deleterious effects, it was still removed from the vast majority of vaccines (aside from influenza) stirctly becuase of pressure from anti-vaccine groups. The problem is that you still have large numbers of families who are convinced that vaccines gave their children ASDs. And I can understand. It can be a very devestating condition, and some people need to be able to assign blame somewhere in order to cope effectively. That would be ok, as far as it goes, but then these folks convice other parents not to vaccinate their children, thereby putting them at risk for some of the serious diseases that we currently prevent with vaccines.


Menolly, excellent post. I agree completely that a large portion of the increased incidence of ASDs is due to shifting definitions as well as improved diagnostic technique. You questioned whether this is of more harm than good, and I agree that this is a tough question.

On the one hand, people with ASDs need therapies to reach their full potential, and the more that are identified and enrolled, the better. On the other hand, the increased incidence has been used to create a sort of hysterical public reaction about how (and I'm paraphrasing) "those evil doctors and drug companies are poisoning our kids...." which leads to it's own set of issues. Hopefully articles like the one in Quick Ben's link will continue to difuse that attitude......

[Ki]

good post, mortice. excellent points.

now maybe resources can go to finding the true cause(s) of autism and possibly a cure. this may be one of those disorders that gene therapy will be useful for.

i'm curious, menolly, what did you think of jenny mccarthy's recent book and campaign re: autism?

[Menolly]

i'm curious, menolly, what did you think of jenny mccarthy's recent book and campaign re: autism?

Truthfully?

I paid no attention to it. I will read studies and "experts" such as Tony Attwood, but I generally pay no nevermind to celebrity campaigns, regardless of if it involves something I care deeply about.

[Ki]

i usually don't pay attention to what celebrities have to say (though, sadfully, i do usually listen). i watched jenny mccarthy briefly on larry king just to hear if she blamed vaccines too, and she did. she said her son was fine one day and the very next day after the vaccine, he wasn't. i bet there are a lot of people who are misinformed thanks to her and i wonder what she would say now in light of this new evidence.

[Mortice Root]

KiGirl, I haven't been any real attention to Jenny McCarthy either, but my guess would be that her reaction to this new study would be a complete dismissal of the results. Not ragging on her personally, it's just that these are not new results. This non-effect has been supported again and again. But it never takes hold. Maybe becuase there aren't any celebrities promoting vaccines. (Although that would change quickly should a celebrity child have a bad outcome from a vaccine preventable disease (like polio) I bet).

Also doesn't McCarthy claim her son's ASD was cured or something? (Again, just something I heard while trying to not pay attention) If so, that just highlights her ignorance. To my knowledge, ASDs are not "curable" conditions. The functioning of people with the disorders may certainly be improved, but "cured"..... nope.

[Menolly]

To my knowledge, ASDs are not "curable" conditions. The functioning of people with the disorders may certainly be improved, but "cured"..... nope.

*nodding*

Precisely. Physical, occupational, and speech therapy can all help some one on the spectrum learn to compensate (Beorn has all sorts of "scripts" to call upon to help him interact, he mentally has to picture hula-hoops to keep even somewhat appropriate personal space distance, and even with exercise his muscle tone is still flacid), but it definitely isn't a cure.

And you know what? I don't want a cure for those who already have the disorder, as long as they can lead productive fullfilling lives with the disorder. Preventative measures enacted to keep more from being born on the spectrum fine. But, if Beorn were to suddenly become neuro-typical? He wouldn't be Beorn, with all his quirks and gifts that come with this disorder...

WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

...yeah...it's sappy...but it got me through some rough spots for a long time...

[Ki]

i knew that there have been plenty of studies that refute the claim that vaccines are to blame for autism but i thought that this study was the first one to tie it to a particular gene. but shows what i know.

as far as a cure, menolly, i understand where you are coming from. i hope i didn't offend you with my "maybe gene therapy will be the way this is cured" comment. i was thinking from a purely medical viewpoint and didn't mean that your son should be cured. anyway, i'm sorry if i sounded uncaring.

[Mortice Root]

KiGirl worte

i knew that there have been plenty of studies that refute the claim that vaccines are to blame for autism but i thought that this study was the first one to tie it to a particular gene.

I didn't think the article did tie it to a gene, though. I read it as study comparing rates of ASDs before and after removal of thimerisol, and showing a continued rise in the rate, depsite the removal of the preservative. I may have misread it, cause it did read it rather quickly (I'm supposed to be working ) but I didn't see that part. I do think there is probably a genetic basis for the disease but I didn't think actual gene identification had occured. It'd be great if it had though.

Menolly wrote

But, if Beorn were to suddenly become neuro-typical? He wouldn't be Beorn, with all his quirks and gifts that come with this disorder...

Yup, I totally understand that. And your "Holland" piece.... not sappy at all.

[Ki]

[quote="Mortice Root"] I didn't think the article did tie it to a gene, though. I read it as study comparing rates of ASDs before and after removal of thimerisol, and showing a continued rise in the rate, depsite the removal of the preservative. I may have misread it, cause it did read it rather quickly (I'm supposed to be working ) but I didn't see that part. I do think there is probably a genetic basis for the disease but I didn't think actual gene identification had occured. It'd be great if it had though. [quote]

maybe i am thinking of another study i just recently read. i read and research new medical technologies as my job and sometimes i get them all mixed up. i'll see if i can find what i am thinking about though.

[Menolly]

as far as a cure, menolly, i understand where you are coming from. i hope i didn't offend you with my "maybe gene therapy will be the way this is cured" comment. i was thinking from a purely medical viewpoint and didn't mean that your son should be cured. anyway, i'm sorry if i sounded uncaring.

Oh no, Ki. That's not how I read it all. No worries.

maybe i am thinking of another study i just recently read. i read and research new medical technologies as my job and sometimes i get them all mixed up. i'll see if i can find what i am thinking about though.

A page or so ago, Syl posted a little about a study that showed gene therapy helped mice with Rett's Syndrome. Perhaps that is what you are thinking of?

[Ki]

whew...i'm so glad, menolly. i would hate to hurt anyone's feelings, but especially yours. i think you are a sweetheart. anyways, maybe syl's article is the one that i am thinking of, but tomorrow when i am at work, i am going to look through my past research to see if it was something else.

[Menolly]

aww...Ki...
enough. please.

Ask malik about the time I caused him to bite his tongue...hard.

maybe then you'll change your mind.

[Ki]

alright, i'll stop, but just wanted you to know that i would hate to hurt your feelings.

i know how malik debates..he probably had it coming.

[Menolly]

*shaking head*

Actually, he did it because he knows I despise debate, and don't do it well anyway. Instead of getting into it with me, he claims to have bit his tongue instead.